THANK YOU SO MUCH FOR JOINING US
TODAY FOR THE SCIENCE ADVOCACY
AND POLICY WORKSHOP.
WE WOULD LIKE TO THANK THE CHAN
ZUCKERBURG, I'M I SAHBA SEDDIGHI,
I'M A CB AND NIH OXFORD
CAMBRIDGE SCHOLARS PROGRAM.
MY COLLEAGUE ALEX AMBRICO IS
SPECIAL PROJECTS MANAGER AT THE
BIOMEDICAL RESEARCH ALLIANCE AND
SCIENCE COMMUNICATION GRADUATE
STUDENT AT STONY BROOK
UNIVERSITY.
TOGETHER WE BRINGING THIS
WEBINAR TO YOU TODAY THANKS TO
SUPPORT OF ZUCKERBURG INITIATIVE
NEURODEGENERATION COMMUNITY
GRANT.
I WILL NOW HAND IT OVER TO ALEX
IF YOU WOULD LIKE TO INTRODUCE
OUR FIRST SPEAKERS.
>>THANK YOU ALL FOR JOINING US
TODAY.
I WANT TO FIRST INTRODUCE OUR
NATIONAL SCIENCE POLICY NETWORK
SPEAKERS, WE HAVE DR. COLLEY,
DR. WELLINGTON AND Ph.D.
CANDIDATE DR. FUTURE DR. BROWN.
I WILL PRESENT A SCIENCE POLICY
101 SEMINAR TODAY FOLLOWED BY A
Q&A SESSION.
>> OUR PRESENTATION WILL START
WITH JENNIFER BROWN WHO WILL
LEAD THE INITIAL PART OF OUR
PRESENTATION.
MYSELF I'M NADINE WELLINGTON
Ph.D. IN CHEMISTRY FROM
MCMASTER AND I WORK WITH NSPN ON
MULTIPLE COMMITTEES
SRI WILL BE PRESENTING THE LAST
PORTION OF OUR PRESENTATION.
FOR THE THE ATTENDEES THAT ARE
PRESENT, NSPN NATIONAL SCIENCE
POLICY NETWORK WORKS TO
ESSENTIALLY BRIDGE COMMUNICATION
GAP BETWEEN POLICY MAKERS AND
SCIENTIFIC RESEARCHERS EARLY
CAREER RESEARCHERS AND
SCIENTIFIC TRAINEES IN ORDER TO
FOSTER COLLABORATION AND SCIENCE
POLICY, EDUCATE GRADUATE
STUDENTS ABOUT THE CAREER PATHS
AVAILABLE TO THEM IN SCIENCE
POLICY AS WELL AS TO GET LAW
MAKERS TO UNDERSTAND THE VALUE
AND IMPORTANCE OF SCIENTIFIC
EVIDENCE IN POLICY MAKING.
I WILL PASS OFF TO JENNIFER NOW.
>> THANKS, NADINE.
AS SHE SAID MY NAME IS JENNIFER
BROWN, A FOURTH YEAR Ph.D.
CANDIDATE NEUROSCIENCE, AT THE
UNIVERSITY OF MINNESOTA TWIN
CITIES I ALSO SERVE ON THE NSPN
LEADERSHIP AS THE CENTRAL HUB
CHAIR.
SO IF ANYONE HAS ANY QUESTIONS
ABOUT NSPN FEEL FREE TO REACH
OUT TO ME VIA EMAIL OR LINKED IN
AFTER THE Q&A.
MOVING ON TO THE AGENDA.
HERE IS AN OVERVIEW OF WHAT WE
WILL BE TALKING ABOUT TODAY.
WE ALREADY DID INTRODUCTIONS AND
FROM THERE I WILL BE TALKING
ABOUT SCIENCE POLICY
DEFINITIONS, NADINE AND I WILL
TOUCH THE IMPORTANCE OF SCIENCE
POLICY AND THEN SKILLS FOLLOWED
BY SKRI TALKING CAREERS AND WAYS
TO GET INVOLVED.
PLEASE NOTE WE DEDICATED TIME
FOR QUESTIONS AFTER THE -- SO
WRITE THEM DOWN OR PLACE THEM IN
THE Q&A AT THE END.
THANK YOU, NADINE.
SO LET'S JUMP RIGHT IN.
IT MAY SURPRISE YOU TO KNOW THAT
THERE ARE MANY DEFINITIONS OF
SCIENCE POLICY.
BECAUSE IT IS SUCH A BROAD
PRACTICE AREA, MANY WEB SITES
AND BOOKS HAVE SLIGHTLY
DIFFERENT DEFINITIONS.
BUT BASICALLY, SCIENCE POLICY IS
UNDERSTANDING HOW SCIENTIFIC
EVIDENCE THE KIND YOU ALL WORK
WITH EVERY DAY, CAN BE APPLIED
TO BETTER SERVE THE PUBLIC
THROUGH GOVERNANCE SYSTEMS SUCH
AS POLICIES, LAWS, RESOLUTIONS.
AND THOSE SYSTEMS CAN BE AT MANY
LEVELS FROM INSTITUTIONAL
POLICIES TO LOCAL CITY
ORDINANCES TO NATIONAL AND
INTERNATIONAL LAW.
SCIENCE POLICY IS WAY WE
SCIENTISTS CAN INFLUENCE SOCIETY
WE ARE USED TO PRESENTING DATA
TO OTHER SCIENTISTS BUT HOW IS
THE DATA THAT WE GENERATE THEN
USED TO MAKE CHANGES IN THE
WIDER WORLD?
THAT IS WHERE SCIENCE POLICY OR
SCIENCE INFORMED POLICY COMES
IN.
ON THE RIGHT YOU CAN SEE A LIST
OF SOME OF THE DIFFERENT TYPES
OF QUESTIONS AND PROBLEMS
SCIENCE POLICY CAN BE USED TO
ADDRESS.
AS I MENTIONED, SCIENCE POLICY
IS A BROAD TERM AND INCLUDES
MANY FACETS OF SCIENCE, POLICY
AND ADVOCACY AS WELL AS
COMMUNICATION.
IT IS SOMETIMES HELPS TO THINK
OF SCIENCE POLICY AS FALLING
INTO TWO BUCKETS OR CATEGORIES.
THE FIRST IS SCIENCE FOR POLICY,
THIS IS USING DATA SCIENCE AND
EVIDENCE TO HELP MAKE BETTER
POLICY DECISIONS.
WHERE BETTER IS BEING MORE
LIKELY TO ACHIEVE THEIR PRIMARY
GOAL WHILE MINIMIZING NEGATIVE
OR UNINTENDED SIDE EFFECTS.
POLICY FOR SCIENCE IS MORE ABOUT
THE STRUCTURE OF THE RESEARCH
ENTERPRISE ITSELF, AND IS MORE
CONCERNED WITH POLICIES THAT
GOVERN THE CONDUCT AND USE OF
SCIENCE.
REALLY THE MOST IMPORTANT THING
IS THESE CATEGORIES ARE JUST A
MENTAL FRAMEWORK AND MANY
SCIENCE POLICY TOPICS FALL INTO
BOTH BUCKETS.
THIS IS BECAUSE SCIENCE AND
POLICY ARE INTERDEPENDENT AND
BIDIRECTIONAL.
SO HERE ARE SOME EXAMPLES.
POLICY FOR SCIENCE DECISIONS
ABOUT STRUCTURE FUNS AND
PRIORITY OF SCIENCE INFLUENCE
THE SCIENCE THAT WILL BE
AVAILABLE IN THE SCIENCE FOR
POLICY APPLICATIONS.
AND THE WAYS THAT SCIENCE IS
USED IN FUEL SHY FORMATION WILL
IN TURN IMPLEMENT THE POLICIES
FORMULATED FOR SCIENCE,
INTERDEPENDENT BIDIRECTIONAL.
IF YOU STUDY NEURODEGENERATION
LIKE I DO, AND CONGRESS DECIDES
TO INCREASE OR DECREASE THE
AMOUNT OF THE BUDGET MEANT FOR A
SPECIFIC DISEASE LIKE AL
ALZHEIMERS OR PARKINSON OR
PASSES A BILL TO FUNDS STUDIES
THAT CAN DIRECTLY IMPACT CHANCES
OF HAVING A GRANT FUNDED AND
THEREFORE DIRECTLY IMPACT THE
KINDS OF STUDIES THAT CAN BE
DONE, LIMITING THOSE STUDIES
WILL LIMIT OUR AMOUNT OF
KNOWLEDGE THAT WE HAVE AVAILABLE
TO MAKE POLICIES.
THE TRADE OFF OF COURSE IS THAT
MONEY SPENT ON FUNDING RESEARCH
AND TECHNOLOGY MEANS MONEY THAT
IS NOT BEING SPENT SOMEWHERE
ELSE.
AND THAT DECISION IS A POLICY
DECISION.
POLICY DECISIONS ARE MADE BY
CONSIDERING A MULTITUDE OF MACK
TORRS NOT JUST IMPACT ON
NEUROSCIENTISTS LIKE US.
SO WHY IS SCIENCE POLICY
IMPORTANT?
WHY DO I AS A GRADUATE STUDENT
VOLUNTEER MY TIME TO DO POLICY
WORK?
IT IS BECAUSE TO QUOTE VANNEVAR
BUSH A IMPORTANT FIGURE IN U.S.
SCIENCE POLICY, SCIENCE BY
ITSELF FROM SLIDES NONPANACEA
FOR INDIVIDUAL SOCIAL AND
ECONOMIC ILLS.
AS SCIENTISTS WE KNOW RESEARCH
IS IMPORTANT OR PRETENT IT IS OR
WILL BE IN THE FUTURE BUT UNLESS
YOU CAN COMMUNICATE THE
IMPORTANCE OF THAT WORK, TO
PEOPLE WHO MAKE POLICY
DECISIONS, AND THE PUBLIC, WHO
ARE ULTIMATELY EITHER GOING TO
FUND WORK OR USE YOUR WORK TO
MAKE DECISIONS, YOUR SCIENCE
WON'T HAVE AS MUCH OF AN IMPACT.
THE ELEVATION OF OSTP
DIRECTOR TO A CABINET LEVEL
POSITION REALLY SIGNALS THE
IMPORTANCE OF SCIENCE POLICY TO
THE CURRENT ADMINISTRATION.
THEN I WAS GOING TO GO INTHE --
YEAH SO A CASE STUDY IN SCIENCE
FOR POLICY, JUST USING SOME
STATS AND FIGURES ABOUT
ALZHEIMER'S DISEASE, TO DO THIS.
SO WE KNOW THAT THE PREVALENCE
OF ALZHEIMERS DISEASE IS GROWING
AS OUR POPULATION IS INCREASING
IN NUMBER AND LIVING LONGER.
AND THERE'S CURRENTLY NO
CURATIVE TREATMENT FOR
ALZHEIMERS AND IT IS VERY
EXPENSIVE IN TERMS OF CARE FOR
PATIENTS WITH THE DISEASE, THEIR
LOST EARNING POTENTIAL AND HAIR
CAREGIVERS.
WE CAN USE DATA TO HELP PUT
POLICIES IN PLACE TO REDUCE MANY
COSTS SYSTEM WHICH INCLUDE LONG
TERM CARE AND CARE GIVER STAFF
LEVELS, HAVING ADEQUATE MEDICAL
FACILITIES, INCREASING THE ED
CARE DONE MANY THE HOME, HEALTH
AND EMPLOYMENT PROTECTIONS FOR
FAMILY CAREGIVERS, DECREASING
HEALTHCARE COSTS, INCREASING
SCREENING AND EARLY DETECTION
SERVICES, MAKING SURE INSURANCE
COVERS THESE SERVICES,
MEDICATION USE, CLINICAL TRIAL
ENROLLMENT INFORMATION, FUNDING
FOR RESEARCH, PHYSICIAN TRAINING
POLICIES TO HELP RECOGNIZE MILD
COGNITIVE IMPAIRMENT ON
ALZHEIMERS PUBLIC AWARENESS
CAMPAIGNS TO HELP COMMUNITIES
RECOGNIZE THESE SIGNS, AS WELL
AS UNDERSTANDING CULTURAL AND
LANGUAGE BARRIERS, THAT PREVENT
PEOPLE FROM SEEKING EARLY
DIAGNOSIS AND DETECTION.
ALL OF THESE ISSUES HAVE DATA
ASSOCIATED WITH THEM THAT COULD
BE APPLIED TO POLICY ACTION.
SO A SECOND EXAMPLE IS POLICY
FOR SCIENCE.
ONE SOMETIMES CONTROVERSIAL
TOPIC CAN BE USE OF ANIMAL
MODELS IN RESEARCH.
ANIMAL RESEARCH IS ALREADY
REGULATED THE NATIONAL STATE AND
INSTITUTIONAL LEVEL WITH
POLICIES PROHIBITING ANIMAL
CRUELTY, THE EXISTENCE OF IAKUK
INSTITUTIONAL ABOUT MALL
COMMITTEES AND AQUARIUM AND
REPLACEMENT OF PANELS WHEN
POSSIBLE.
THEY GOVERN WHAT WHEN WHERE AND
HOW SCIENTIST USE ANIMALS IN A
RESEARCH SETTING AND ONE EXAMPLE
OF POLICY FOR SCIENCE.
WITH THAT I WILL HAND IT TO
NADINE TO TALK ABOUT WHY YOU ARE
MORE QUALIFIED TO GIVE POLICY
ADVICE THAN YOU THINK YOU ARE.
OKAY.
SO HOPEFULLY THIS POINT WE HAVE
CONVEYED TO YOU THAT THE REACH
OF SCIENCE POLICY IS ACTUALLY
QUITE EXPENSIVE, IT IS NOT JUST
SCIENTIFIC TOPICS OR ISSUES,
THAT SCIENCE POLICY COVERS.
SO I FIRST WANTED TO START BY
GOING OVER SOME TYPICAL
SCIENTIFIC SECTORS OF SOCIETY
WHERE YOU CAN IMAGINE YOUR
POLICY SKILLS WOULD BE PUT TO
USE.
TRANSPORTATION, STREET DESIGN
CITY DESIGN HAVE MAJOR
CONSEQUENCES ON HEALTH OF PEOPLE
WHO LIVE NEAR STREETS,
AGRICULTURE IS A IMPORTANT ISSUE
ESPECIALLY AT THIS TIME WITH
RESPECT TO CLIMATE CHANGE, THE
USE OF ENERGY IS ANOTHER
IMPORTANT ISSUE AT THIS TIME
BECAUSE AS WE HAVE SEEN WITH THE
TRANSITION TO ELECTRICITY FROM A
FOSSIL FUEL -- A FOSSIL FUEL
BASED ECONOMY, IT IS IMPORTANT
NOT ONLY TO BE ABLE TO TRANSFORM
OUR ECONOMIES TO ELECTRIFIED
SOCIETIES BUT THE MINERALS AND
THE METALS AND OTHER MATERIALS
THIS TRANSITION IS BASED ON NEED
TO BE SOURCED IN ETHICAL WAYS
AND SCIENCE POLICY IS A MAJOR
PART OF DETERMINING HOW THAT
TRANSITION WILL GO FORWARD.
AND WHAT THE OUTCOMES OF IT WILL
BE.
HEALTH POLICY IS A VERY
IMPORTANT ASPECT OF SOCIETY,ER
EVERYTHING TOUCHES HEALTH
POLICY, TRANSPORTATION DOES,
ENERGY AND UTILITIES AS WELL AS
THE PERFORMANCE AND MANAGEMENT
OF HEALTH AND WELLNESS AND
MANAGEMENT OF THE MEDICAL SYSTEM
IN THE UNITED STATES.
ENVIRONMENTAL AND NATURAL
RESOURCE MANAGEMENT IS ANOTHER
IMPORTANT ISSUE IN SCIENCE
POLICY AT THE TIME.
WE HAVE SEEN OVER THE PAST
DECADE HOW THE AMAZON -- MISUSE
OF AMAZON LED TO DESTRUCTION AND
DESERT PHICATION OF THE AMAZON
SO IT IS VERY IMPORTANT TO USE
SCIENCE POLICY IN ORDER TO TRY
AND ESTABLISH BETTER REGULATIONS
AND BETTER PRACTICES IN ORDER TO
SUPPORT HEALTHY FUTURE FOR
EVERYBODY.
WHAT YOU MAY NOT BE AWARE OF IS
THAT OUTSIDE OF SCIENTIFIC
FIELDS AND SCIENTIFIC SECTORS,
SCIENCE POLICY IS STILL ALSO
VERY IMPORTANT.
YOU MAY SEE SOME OF THESE TOPICS
AND YOU MAY NOT THINK THAT THEY
HAVE A SCIENCE POLICY COMPONENT
INITIALLY, BUT ALL OF THESE
SECTORS AS WELL AS OTHER -- MOST
ASPECTS OF SOCIETY, EXCUSE ME,
BUSINESS AND LABOR, EMPLOYMENT,
HAVE RANS AFFAIRS, EVEN --
VETERANS AFFAIRS HOW ELECTIONS
ARE CONDUCTED TOUCH ON SCIENCE
IN SOME WAY AND SO WHAT I'M
TRYING TO CONVEY TO YOU HERE IS
THAT I KNOW MOST OF YOU ARE
PROBABLY INVOLVED IN
NEUROSCIENCE OR SOME OTHER STEM
TOPITOPIC BUT JUST BECAUSE YOU HAVE
AN INTEREST IN SPECIFIC TOPIC
YOU ARE NOT PIGEON HOLED TO
DOING SCIENCE POLICY ON THAT
PARTICULAR TOPIC.
AS WE WILL DISCUSS IN A FEW
SLIDES, JUST BY THE FACT THAT
YOU ARE AA SCIENTIFIC RESEARCHER
YOU GAIN A LOT OF SKILLS THAT
ARE TRANSFERABLE TO MANY
DIFFERENT ASPECTS OF SCIENCE
POLICY.
AND SO WHEN CONSIDERING SCIENCE
POLICY OR THINKING WHERE YOU CAN
GET INVOLVED, MAKE SURE YOU KEEP
AN OPEN MIND AND EVALUATE YOUR
VALUES YOUR PASSIONS, AND YOUR
INTERESTS IN ORDER TO HAVE A
SATISFYING CAREER IN SCIENCE
POLICY.
SO ON THE PREVIOUS TWO SLIDES I
SHOWED YOU A LARGE NUMBER OF
TOPICS WITH RESPECT TO SOCIETY,
GOVERNMENT, THAT REGULATE OUR
LIVES.
AND ESPECIALLY THE PERFORMANCE
OF SCIENCE AND OUTCOMES OF
SCIENCE AND HOW THOSE OUTCOMES
ARE USED IN OUR LIVES.
AND A LOT OF POLICY THAT
REGULATES THE PERFORMANCE OF
SCIENCE USE OF OUTCOMES.
PROTECTION OF SCIENCE, THE
FUNDING OF SCIENCE, BASICALLY
EVERYTHING AROUND SCIENCE POLICY
IS OFTEN REGULATED BY A
GOVERNMENT.
IF WE TAKE A LOO LOOK AT THE
EDUCATIONAL BACKGROUND OF THE
116TH CONGRESS WE WILL SEE ONLY
7% OF THOSE INDIVIDUALS HAD A
RESEARCH OR SORRY HAD A DEGREE
IN STEM FIELD WHICH MEANS WAS
USED TO SCIENTIFIC RESEARCH
UNDERSTOOD THE SCIENTIFIC
PROCESS, AND WAS THEN ABLE OR IS
ABLE TO THEN TRANSLATE
SCIENTIFIC INFORMATION TO POLICY
MAKERS WHO MAY OR MAY NOT HAVE
ANY BACKGROUND IN SCIENCE.
MOST OF THE POLICY THAT EFFECTS
OUR LIVES AND THAT AFFECTS THE
PERFORMANCE OF SCIENCE IN THE
UNITED STATES ISEEIATED BY
PEOPLE WHO -- IS CREATED BY
PEOPLE WITH BACKGROUNDS MORE SO
IN HUMANITIES.
OF COURSE -- LAWYERS, HISTORY,
AND ANOTHER THING I WANTED TO
POINT OUT ON A PREVIOUS SLIDE
I'M JUST REMEMBERING IS THAT
EVEN IF YOU ARE NOT FROM A STEM
BACKGROUND, IT IS NOT JUST
PHYSICAL SCIENCE THAT IS
IMPORTANT TO SCIENCE POLICY,
MAJOR PART OF SCIENCE POLICY IS
ALSO THE SOCIAL SCIENCES.
THEY STUDY PEOPLE, THEY
UNDERSTAND HOW PEOPLE
COMMUNICATE WITH ONE ANOTHER,
THEY UNDERSTAND HOW PEOPLE NEED
TO BE COMMUNICATED TO, IN ORDER
TO UNDERSTAND AND ACT ON
INFORMATION BEING PRESENTED TO
THEM.
OVER THE PAST COUPLE OF YEARS WE
HAVE DEFINITELY SEEN THAT LAPSES
IN COMMUNICATION OR
MISUNDERSTANDING OF SCIENCE HAS
LED TO DETRIMENTAL EFFECTS FOR
PEOPLE EVEN LEADING TO SOME
PEOPLE GETTING SERIOUSLY ILL OR
LOSING THEIR LIVES BECAUSE OF
MISCOMMUNICATION OF SCIENCE.
SO WHEN YOU LOOK AT THE MAKE UP
OF PEOPLE WHO GENERALLY CRAFT
THE POLICIES IN THE UNITED
STATES YOU CAN SEE WE DO NEED
SCIENTISTS WHO ARE PASSIONATE
ABOUT MAKING SURE THAT THAT
BRIDGE BETWEEN SCIENTIFIC
RESEARCH AND POLICY MAKING IS
BRIDGED WITH SCIENCE POLICY
ADVOCATES BECAUSE YOUR
EXPERIENCE IS NECESSARY, AND
YOUR EXPERIENCE IS QUITE VALID
SO PLEASE DON'T FEEL
INTIMIDATED, BUT YOU DON'T HAVE
A LAW BACKGROUND OR YOU DON'T
HAVE LAW EDUCATION, YOUR VALUE
IS IN WHAT YOU KNOW AND WHAT YOU
CAN LEARN AND HOW QUICKLY YOU
CAN LEARN IT AS WELL.
SO WHEN WE TALK SCIENCE POLICY
ADVOCATES AND ROLES, IT IS NOT
JUST ONE DISTINCT ROLE THAT YOU
CAN FULFILL IN SCIENCE POLICY.
I'M GOING TO GO OVER THIS BOOK
-- THESE CATEGORIES DISCUSSED IN
THIS BOOK, THE HONEST BROKER BY
ROGER, HE IS A SCIENCE POLICY
PROFESSIONAL WHO PUBLISH AD BOOK
IN ORDER TO UNDERSTAND AND
DELINEATE ROLES SCIENTISTS COULD
ASSUME WHEN WORKING WITHIN
SCIENCE POLICY.
SO THE FIRST ONE WE WOULD BE
MOST FAMILIAR WITH IS THE PURE
SCIENTIST.
SO THE PURE SCIENTIST IS
GENERALLY FOCUSED ON PRODUCING
THE RESEARCH THAT THE POLICY
ANALYSTS AND SCIENCE POLICY
PROFESSIONALS WILL USE IN ORDER
TO CRAFT POLICY.
THIS DOESN'T MEAN THEY CAN'T
SOMETIMES CHIME IN WITH
INFORMATION OR PROVIDE SOME
BACKGROUND BUT GENERALLY THEY
ARE NOT FOCUSED ON ADVOCACY OR
COMMUNICATION BUT STRICTLY THE
RESEARCH.
SO THESE PEOPLE ARE PRIMARILY
AFFECTED BY POLICY FOR SCIENCE
ASPECT OF SCIENCE POLICY.
THE NEXT IS THE SCIENCE ARBITER.
THE SCIENCE ARBITER MAY ALSO
STILL PARTICIPATE IN THE
PRODUCTION OF SCIENCE AND
GENERATING SCIENCE OUTCOMES.
BUT THEY ALSO DO SERVE TO
PROVIDE INFORMATION TO DECISION
MAKERS AND POLICY MAKERS WHEN
NECESSARY.
SO ONE THICK TO UNDERSTAND ABOUT
SCIENCE POLICY AS WELL AS POLICY
MAKING IN GENERAL, IS THAT THEIR
LIVES AND WORK MOVE AT A VERY
FAST PACE, AS SCIENCE
RESEARCHERS YOU ARE MORE USED TO
TAKING YOUR TIME TO DEEP DIVE
INTO VERY NARROW SUBJECTS, IT IS
OPPOSITE FOR POLICY MAKERS.
THEY NEED TO BE QUICK ON THEIR
FEET, THEY NEED TO HAVE A BROAD
UNDERSTANDING BUT A SHALLOW
UNDERSTANDING OF A LOT OF TOPICS
SO THAT IF THEY ARE ASKED ABOUT
SOMETHING THEY ARE ABLE TO
QUICKLY RESPOND.
SO THE ROLE OF THE SCIENCE
ARBITER IS TO BE THAT PERSON FOR
A POLICY MAKER WHEN THEY SAY
HEY, I NEED A BACKGROUND ON THIS
PARTICULAR TOPIC, CAN YOU HELP
ME, YOU WILL PROVIDE UNBIASED
FACT BASED INFORMATION.
YOU ARE MERELY PROVIDING THEM A
WELL ROUNDED BACKGROUND SO THEY
CAN BE MORE INFORMED.
IF YOU DO WANT TO ASSUME A ROLE
THAT'S MORE IN LINE WITH YOUR
VALUES AND ADVOCACY THEN YOU CAN
BE AN ISSUE ISSUED A VOW KATE. ISSUE, ADVO CATE.
IF YOU PUSH FOR CERTAIN POLICY,
YOU CANNOT ALSO PRESENT YOURSELF
AS SOMEBODY WHO PROVIDES
UNBIASED FACT BASED INFORMATION.
SO IF YOU ARE ADVOCATING YOU
SHOULD NOT TRY TO STRADDLE THE
DIVIDE BETWEEN ADVOCATING AND
BEING UNBIASED.
SO JUST BE CAREFUL WITH THAT.
AND LASTLY, THE HONEST BROKER.
THAT IS SOMEBODY WHO PROVIDES A
BROAD ARRAY OF INFORMATION AND
SERVES AS INFORMATION REPOSITORY
AND IS NOT FOCUSED ON PRODUCING
SCIENCE OR GENERATING SCIENTIFIC
OUTCOMES BUT IS AN INFORMATION
PROVIDER TO POLICY MAKERS.
SO AGAIN NOW THAT YOU ARE
THINKING WHERE YOU MAY FIT IN
NOR SCIENCE POLICY, I WANT TO
TELL YOU AS I MENTIONED
PREVIOUSLY, THAT YOUR WORK RIGHT
NOW AS SCIENTIFIC TRAINEES OR
RESEARCHERS OR EARLY CAREER
RESEARCHERS HAS PREPARED YOU
WELL FOR SCIENCE POLICY CAREER.
IF YOU LOOK AT THE GRAPHIC ON
THE RIGHT HERE ON THE LEFT-HAND
SIDE THOSE BLACK BARS ARE
SHOWING YOU DOCTORAL SKILLS OR
SKILLS YOU GAIN DURING YOUR
ADVANCED DEGREE THAT ARE THEN
TRANSFERABLE TO SCIENCE POLICY
WORK.
SOME THOSE TOPICS ARE CRITICAL
THINKING, THE ABILITY TO NOT
ONLY FIND INFORMATION EVIDENCE
WHEN YOU NEED IT BUT SYNTHESIZE
INTO A VERY SUCCINCT REPORT,
DATA ANALYSIS IN PARTICULAR,
PROJECT MANAGEMENT.
YOU DO NEED TO FOCUS ON, IF YOU
ARE INTERESTED IN A SCIENCE
POLICY CAREER.
SO A LOT OF BEING A POLICY MAKER
IS COMMUNICATION, ESPECIALLY IF
YOU ARE LOOKING TO ASSUME A ROLE
WHERE YOU ARE PROVIDING
INFORMATION TO POLICY MAKERS,
YOU NEED TO KNOW HOW TO NETWORK,
BUILD RELATIONSHIPS, YOU NEED TO
BE PATIENT AND ASSERTIVE AT THE
SAME TIME AND YOU NEED TO BE
RESPECTFUL AND TRUSTWORTHY.
ONE OF THE IMPORTANT THINGS IS
THAT DESPITE YOU HAVING YOUR
SCIENTIFIC EDUCATION AND
PROBABLY BEING THE SMARTEST
PERSON ON A PARTICULAR
SCIENTIFIC TOPIC MANY THE ROOM,
THERE ARE OTHER PEOPLE WHO HAVE
JUST AS IMPORTANT EDUCATION AND
EXPERIENCE EVEN IF IT IS NOT
SCIENCE BASED.
SO YOU NEED TO BE ABLE THE
COMMUNICATE WITH THESE PEOPLE,
CONVEY YOUR UNDERSTANDING AND
LISTEN TO THEM SO THAT YOU
UNDERSTAND WHERE THEY ARE COMING
FROM.
SUCCINCT AND CLEAR ORAL
COMMUNICATION IS ALSO EXTREMELY
IMPORTANT WORKING AS SCIENCE
POLICY PROFESSIONAL SO PRACTICE
PUBLIC SPEAKING, SPEAKING TO
PEOPLE IN DIFFERENT POSITIONS OF
AUTHORITY AND FINDING
OPPORTUNITIES TO PRACTICE THOSE
SKILLS.
SIMILARLY WRITTEN COMMUNICATION
IS VERY IMPORTANT AND POLICY OR
WRITTEN COMMUNICATION IN SCIENCE
POLICY IS QUITE DIFFERENT THAN
WHAT YOU ARE PROBABLY USED TO AS
A SCIENCE RESEARCHER OR SCIENCE
PROFESSIONAL.
IT'S IMPORTANT TO FIND
OPPORTUNITIES TO LEARN HOW TO
WRITE POLICY BRIEFS AND POLICY
MEMOS AND WRITE IN THE ACTIVE
VOICE.
AND AGAIN SUCCINCT AND CLEAR
COMMUNICATION IS VERY IMPORTANT
IN ANY TYPE OF COMMUNICATION AS
A SCIENCE POLICY PROFESSIONAL.
LASTLY, BUT ALSO -- LASTLY BUT
ALSO JUST AS IMPORTANT, YOU WANT
TO UNDERSTAND THE STRUCTURE AND
THE PROCEDURES AND THE MN DATES
OF YOUR GOVERNMENT,
UNDERSTANDING WHAT YOUR
DIFFERENT CABINETS, CABINET
LEADERS ARE UP TO AND
PRIORITIES.
AND ALSO BE FAMILIAR WITH THE
LANDSCAPE OUTSIDE OF GOVERNMENT,
SO WHAT ARE THE NON-PROFITS THAT
ARE CLOSE PROXIMITY TO
GOVERNMENT DOING?
WHAT IS PRIVATE INDUSTRY DOING?
ALL THESE ARE REALLY IMPORTANT
TO BEING A WELL ROUNDED
PROFESSIONAL.
SO SOME OF THE AREAS WHERE YOU
CAN PRACTICE, IF YOU DECIDE TO
GO INTO SCIENCE POLICY, AND YOU
HAVE DECIDED THAT YOU WANT TO
PERFORM A SPECIFIC SCIPOL ROLE,
THESE ARE TOP FOUR I WILL GO
OVER IN THE NEXT FOUR SLIDES.
COMMUNICATION AND ADVOCACY I
TOUCHED ON QUITE A BIT ALREADY,
COMMUNICATION IS FUNDAMENTAL.
POLICY DEVELOPMENT AND POLICY
ANALYSIS, SCIENCE DIPLOMACY AND
POLICY IMPLEMENTATION AND
OVERSIGHT.
SO FOR COMMUNICATIONS AND
ADVOCACY, AS I MENTIONED WITH
ROGER'S FOUR CATEGORIES YOU ARE
WORKING TO TRANSLATE SCIENTIFIC
KNOWLEDGE AND SCIENTIFIC
COMMUNICATION SO THAT IT IS
ACCESSIBLE TO EVERYBODY.
SO THAT MEANS PUBLIC, LAW MAKERS
AND ANYBODY ELSE WHO MAY HAVE A
VESTED INTEREST OR BE IMPACTED
BY THE OUTCOME OF THIS RESEARCH.
WHICH IS WHY PLAIN LANGUAGE
WRITING AND NOT USING JARGON
WHEN TRYING TO COMMUNICATE
SCIENTIFIC CONCEPTS IS VERY
IMPORTANT, IN SCIENCE POLICY.
SO WE WANT TO AGAIN USE
NARRATIVES USE STORIES IN ORDER
TO GET SCIENCE TO RESONATE WITH
PEOPLE, AND GET THEM TO
INCORPORATE THAT INTO THEIR
DAILY LIVES OR BE ABLE TO
UNDERSTAND WHY CERTAIN POLICIES
ARE IMPORTANT FOR THEIR DAILY
LIVES.
IF YOU ARE WORKING IN POLICY
DEVELOPMENT AND ANALYSIS YOU CAN
ASSUME A NUMBER OF ROLES.
YOU CAN BE ADVISING, YOU CAN
WORK STRICTLY IN POLICY RESEARCH
WHERE YOU ARE GENERATING MEMOS,
REPORTS AND BRIEFS.
AND REALLY THOSE ARE USED TO --
FOR INSTANCE THE CONGRESSIONAL
RESEARCH LIBRARY, IS WHERE
MEMBERS OF THE HOUSE OR SENATE
GO IF NAY ARE LOOKING TO GET A
BACKGROUND ON A PARTICULAR TOPIC
OR UNDERSTAND RECENT
DEVELOPMENTS, THE CONGRESSIONAL
RESEARCH SERVICE PROVIDES
REPORTS FOR THEM TO DO SO.
YOU CAN ALSO ACT AS AN EXPERT IN
COURT AND HELP TO BRAINSTORM NEW
POLICY BASED ON SCIENTIFIC
EVIDENCE.
SCIENCE DIPLOMACY AS WE
EXPERIENCED THE LAST COUPLE OF
YEARS IS ANOTHER IMPORTANT
ASPECT OF SCIENCE POLICY.
THE POINT OF SCIENCE DIPLOMACY
IS TO TAKE SCIENCE POLICY TO A
GLOBAL SCALE.
SO YOU ARE WORKING WITH LEADERS
IN OTHER NATIONS IN ORDER TO
ADVANCE COMMON FOREIGN POLICY
OBJECTIVES IN ORDER TO
ACCOMPLISH GOALS THAT OTHERWISE
WOULD BE INCREDIBLY DIFFICULT
FOR A SINGLE NATION TO
ACCOMPLISH ON THEIR OWN.
WE HAVE ALL SEEN COVID AND THE
INTERNATIONAL COLLABORATION THAT
WAS NECESSARY IN ORDER TO
ADDRESS COVID AND ALSO
DISTRIBUTE VACCINES.
THE UN IS INVOLVED IN THE COVAX
INITIATIVE WHICH STANDS FOR I
BELIEVE COVID-19 VACCINE ACCESS.
THEY WORK TO ENSURE THERE WAS
EQUITABLE AND RAPID DISTRIBUTION
OF VACCINES GLOBALLY.
SO SCIENCE DIPLOMACY IS AN
IMPORTANT ASPECT OF TAKING
SCIENCE POLICY ACROSS THE WORLD.
ENSURING BENEFITS FOR EVERYBODY
GLOBALLY.
LASTLY IF YOU DECIDE TO WORK IN
POLICY IMPLEMENTATION AND
OVERSIGHT, ON THE LEFT WE HAVE
LOCALS FROM SOME INSTITUTES THAT
DRAFT POLICY FOR PARTICULAR
RESEARCH SECTORS, BUT AS WELL
YOU CAN WORK IN THE PUBLIC
SPHERE OR THE PRIVATE SPHERE OR
NOT FOR PROFIT IN ORDER TO
GENERATE THESE POLICIES THAT
DETERMINE STRUCTURE FUNDING AND
MANAGEMENT OF SCIENCE PROGRAMS.
POLICY AUDITING IS ALSO ANOTHER
ASPECT OF PARTICULARLY POLICY
FOR SCIENCE THAT YOU CAN GET
INVOLVED WITH.
SO LASTLY, I WANT TO TOUCH ON
SOME OTHER SETTINGS, JUST TO
SHOW YOU THE DIVERSITY OF
CAREERS THAT COULD BE AVAILABLE
TO YOU WHICH WILL BE DISCUSSED
ON A LATER SLIDE.
BUT AS I MENTIONED MULTIPLE
TIMES GOVERNMENT OF COURSE DEALS
WITH SCIENCE POLICY BUT SOME
OTHER PLACES THAT YOU MAY NOT
HAVE THOUGHT OF WOULD BE THINK
TANKS, THERE ARE SPECIFIC POLICY
RESEARCH INSTITUTIONS AND
NON-PROFITS THAT ADVOCATE
SPECIFIC ISSUES.
ACADEMIA AND LOBBYING FIRMS ARE
ALSO PLACES WHERE YOU CAN BECOME
A SCIENCE POLICY PROFESSIONAL
AND ADVOCATE OR PROVIDE
INFORMATION ON ISSUES THAT ARE
IMPORTANT TO U YOU YOU.
I'M GOING TO PASS IT TO SHRI AND
HE WILL DISCUSS HOW YOU CAN MOLD
YOUR CAREER TO BECOME A SCIENCE
POLICY PROFESSIONAL.
>> HEY JENNIFER, THANK YOU FOR
THAT WONDERFUL SETUP.
THE SLIDE BASICALLY IS JUST
QUICKLY TO GIVE YOU AN OVERVIEW
OF ALL THE POTENTIAL CAREER
PATHS THAT NADINE DISCUSSED.
AND I ONE YOU THROUGH SOME OF
THE OTHER STEPS THAT WILL TAKE
YOU HOME IN TERMS OF WHAT YOU
NEED TO DO TO PREPARE FOR A
SCIPOL CAREER.
SO IN TERMS OF PREPARING FOR A
SCIPOL CAREER OBVIOUSLY THE BEST
WAY TO DO IT IS TO LAUNCH INTO A
SCIENCE TECHNOLOGY POLICY
FELLOWSHIP, IMMEDIATELY AFTER
YOU FINISH GRADUATE SCHOOL.
BUT THE PROBLEM IS THAT THE
IDEAL WAY TO GO ABOUT THAT IS TO
CREATE A FOUNDATION USING SOME
OF THE ITEMS THAT I'M LISTING
HERE.
THEN CRAFT A RESUME THAT ALLOW
YOU TO DEMONSTRATE LEADERSHIP
INITIATIVES SKILLS AND
COLLABORATION AND LEARN
TRANSITION STEPS BEFORE YOU
ENTER THAT FELLOWSHIP FOR YOUR
SCIPOL CAREER.
SO WHAT IS A SCIENCE AND
TECHNOLOGY POLICY FELLOWSHIP?
IT IS FUNDAMENTALLY VERY
STRUCTURED WAY TO CONTRIBUTE TO
YOUR EXPERTISE AND PERSPECTIVES
TO THE POLICY MAKING PROCESS.
THIS IS TYPICALLY DONE THROUGH
ENTITY OR ORGANIZATION AND WHAT
HAPPENS THERE IS IN RETURN YOU
RECEIVE A MENTOR, YOU RECEIVE
GUIDANCE, GET TO CONNECT WITH
LIKE MINDED PEERS AND
FUNDAMENTALLY YOU BUILD A
NETWORK THAT I ALLOWS YOU TO
ENHANCE YOUR PREVIOUS SKILLS AND
LEARN NEW SKILLS AS YOU LAUNCH
INTO YOUR SCIPOL CAREER.
ONE THING THAT I WOULD LIKE TO
POINT OUT HERE IS SOMETIMES IT
SO HAPPENS AS NADINE MENTIONED
IN ONE OF HER SLIDES THAT YOUR
BACKGROUND AND YOUR TRAINING HAS
ABSOLUTELY NOTHING TO DO WITH
WHERE YOU EVENTUALLY GET PLACED.
SOME OF IT CERTAINLY OF SOME
INSTANCES OF NEUROSCIENTISTS
WORKING IN THE DEPARTMENT OF
TRANSPORTATION, I KNOW A AAAS
FELLOW WITH A BACKGROUND IN
GEOGRAPHY WORKING IN TRADE
EVANS, SO FORTH.
MY POINT IS THAT WHAT THEY ARE
LOOKING FOR IS A GOOD FIT WITH
YOUR BACKGROUND AND SKILLS AND
THEY WILL FUNDAMENTALLY CONSORT
WITH YOU OF COURSE DECIDE WHERE
YOUR PLACEMENT IS.
THE AAAS SCIENCE TECHNOLOGY
POLICY FELLOWSHIP IS OBVIOUSLY A
PRESTIGIOUS FELLOWSHIP, STARTED
IN 1973 WITH SEVEN FELLOWS ON
CAPITOL HILL, NOW GROWN INTO A
HUGE PROGRAM, WHERE US POINT IT
IS IN THE 50TH YEAR, TYPICAL
PLACEMENT ACROSS ABOUT THE
EXECUTIVE BRANCH LEGISLATIVE
BRANCH JUDICIAL BRANCH.
WHAT IS BASED IN WASHINGTON D.C.
POSITION OF PREDOMINANTLY IN THE
EXECUTIVE BRANCH LAST HEARD
ABOUT 260 POSITIONS.
YOU OFTEN GET TO WORK WITH HEAVY
DUTY ENTITIES LIKE THE NIH AND
NATIONAL SCIENCE FOUNDATION.
THE FELLOWS IN THE LEGISLATIVE
BRANCH USUALLY THROUGH PARTNER
SOCIETIES, IN TERMS OF JUDICIAL
BRANCH FROM WHAT I UNDERSTOOD
TWO POSITIONS, EVERY ONCE IN A
WHILE THERE IS ADDITIONAL
FELLOWSHIP, THE ROGER GLOBAL
FELLOWSHIP.
I WON'T GO INTO.
THESE ARE SOME EXAMPLES OF
FEDERAL AND GOVERNMENT THAT YOU
COULD POTENTIALLY WORK ON.
NADINE TOUCHED ON A FEW HERE.
IN TERMS OF STATE GOVERNMENT ONE
THING I WANT TO POINT OUT IS
THAT SEVERAL STATES HAVE MODELED
AND CREATED OWN STATE
FELLOWSHIPS.
ALL BASED ON THE A,AS SCIENCE
AND TECHNOLOGY POLICY FELLOWSHIP
MODEL.
CALIFORNIA WAS ONE TO FIRST
START THIS.
SINCE THEN CREATED DOCUMENTS AND
INFRASTRUCTURE FOR EVERYBODY
ELSE INTERESTED IN STARTING A IF
HE WILL LOW SHIP MANY THEIR
STATE.
THE ONE THING THAT I WOULD LIKE
-- FELLOWSHIP IN THEIR STATE.
THE NATIONAL SCIENCE POLICY
NETWORK THAT THREE OF US ARE
PART OF HAS AN AD HOC STATE
FELLOWSHIP COMMITTEE WHERE SOME
OF THE PEOPLE INVOLVED IN
STARTING FELLOWSHIPS IN STATES
ACTUALLY MENTOR IN PLAIN AND
GUIDE NEXT GENERATION OF PEOPLE
WHO WANT TO START FELLOWSHIPS IN
THEIR STATES. ONE OTHER THING
TO POINT OUT IS THAT FELLOWSHIPS
SPAN OTHER ORGANIZATIONS TOO.
THIS COULD INVOLVE NGOs, THIS
COULD INVOLVE RESEARCH ENTITIES,
ALSO BE THE PHARMACEUTICAL
INDUSTRY FOR EXAMPLE -- COULD BE
REGULAR SRI AS WELL LIKE
MODZILLA.
ESPN RUNS SCIPOL SCHOLARS
RESIDENTS PROGRAM THEREFORE
WHERE FOR A FEW WEEKS YOU ARE
THROWN IN WITH OTHER LIKE MINDED
PEERS FOLLOWING COMPETITIVE AND
SELECTIVE APPLICATION PROCESS,
AND YOU LEARN THE RUDIMENTS OF
WHAT YOU NEED TO DO TO GET
SCIENCE POLICY CAREER LAUNCHED.
PROFESSIONAL SOCIETY I CANNOT
EMPHASIS HOW IMPORTANT IT IS TO
GET INVOLVED WITH EYE
PROFESSIONAL SOCIETIES.
IT IS A LONG LIST HERE.
AND THE ADVANTAGE WITH GETTING
INVOLVED WITH PROFESSIONAL
SOCIETIES LIKE NSPN IS YOU GET A
STRUCTURED WAY IN WHICH YOU CAN
OBTAIN VALUABLE LEADERSHIP
EXPERIENCE AND SKILLS, YOU CAN
ALSO HONE YOUR WRITING AND
SPEAKING PROFICIENCIES.
THE OTHER ADDITIONAL BENEFIT OF
COURSE IS THEY USUALLY HAVE
TRAINING WEBINARS FORMAL
EDUCATIONAL PROGRAMS, AND SO ON
AND SO FORTH, WHICH IF YOU STAY
ON TOP OF LIEU THE WEEKLY NEWS
LETTER YOU DON'T HAVE TO GO
SEARCHING FOR THESE, YOU CAN
JUST PICK AND CHOOSE AND
PARTICIPATE IN THOSE.
IN THIS LONG LIST THOUGH I WOULD
LIKE TO POINT OUT A FEW THAT I
HAVE PERSONALLY BEEN INVOLVED
WITH, ONE IS THE AMERICAN
ASSOCIATION FOR THE ADVANCEMENT
OF SCIENCE, COUPLE OF THINGS
THAT I PARTICIPATED WITH THEM,
THEY RUN A NICE POLICY MAKERS
WORKSHOP, WHERE YOU GET TO
UNDERSTAND THINGS LIKE THE
FEDERAL BUDGET YOU KNOW HOW THE
BUDGET IS BALANCED, YOU
RECOGNIZE ALSO HOW THE AMERICAN
GOVERNMENT WORKS.
SO THOSE ARE IMPORTANT SKILLS
BEFORE YOU END UP IN WASHINGTON
IF YOU ARE DOING THE AAAS FOR
EXAMPLE, THE CALIFORNIA COUNCIL
ON SCIENCE AND TECHNOLOGY IS
ANOTHER ONE THAT I WANT TO POINT
OUT AND THE LAST TWO THAT I
WOULD LIKE TO BRING TO YOUR
ATTENTION IS THE ENGAGING
SCIENTISTS AND ENGINEERS IN
POLICY, AND ENGAGING ENGINEERS
AND SCIENTIST ACTING LOCALLY
ESAL.
NEXT PLEASE.
ONE OTHER THING YOU HAVE TO DO
WHICH INCREDIBLY HELP YOU, IS TO
GET A -- BE WITH THE
FOUNDATIONAL TEXT IN SCIENCE AND
TECHNOLOGY POLICY.
HERE ON THE RIGHT GIVE YOU AN
EXAMPLE OF TEXT THAT CONCERN
VIABLE AND NECESSARY IF YOU WANT
TO BE INVOLVED IN A SCIPOL
CAREER THIS IS THE WITHIN WE ARE
USING.
DEBORAH STEIN WHO RUN AS SCIENCE
TECHNOLOGY POLICY ACADEMY AND
RUNS FOUR COURSES WHERE YOU
LEARN ALL THE SKILLS TO LAUNCH
YOUR SCIPOL CAREER, USES THIS
BOOK AS A PARTS OF HER COURSE
WORK.
DEBRA WAS AT ONE POINT
APPOINTING THE WHITE HOUSE
OFFICE OF SCIENCE AND TECHNOLOGY
POLICY.
NEXT PLEASE.
STAYING ON TOP OF THE NEWS.
I CANNOT EMPHASIZE HOW CRITICAL
THIS IS.
AND THERE'S SEVERAL WAYS TO DO
THAT.
STAYING ON TOP OF THE NEWS
ALLOWS YOU FIRST AND FOREMOST TO
BE ACTIVE ENGAGED AROUND THE
WORLD AND MAKING CONVERSATION
NETWORK AND AT THE TIME OF YOUR
INTERVIEWS IT HELPS TO SHOWCASE
THE FACT THAT THERE'S MORE TO
YOU THAN JUST YOUR GRADUATE
SCHOOL BACKGROUND.
THERE'S SEVERAL WAYS TO DO THIS
BUT I'M HIGHLIGHTING A FEW HERE.
ONE IS AAAS POLICY ALERT.
WHICH IS BASICALLY WEEKLY NEWS
LETTER THAT GIVES YOU RUN UP OF
ALL POLICIES CURRENTLY IN
DISCUSSION.
PARTICULARLY THOSE AFFECTING
SCIENCE AND TECHNOLOGY.
YOU HAVE TO BE A AAAS MEMBER TO
RECEIVE THIS POLICY ALERT.
THE THING I LIKE ABOUT IT IS NOT
ONLY DO YOU RECEIVE ALL THAT
POLICY INFORMATION YOU RECEIVE
AN ACTION ALERT WHERE -- WHICH
YOU CAN TRANSLATE INTO AN
ADVOCACY ACTION. SO NOT ONLY
ARE YOU LEARNING ABOUT POLICIES,
BUT YOU ARE ALSO BUILDING
ADVOCACY SKILLS AT THE SAME
TIME.
THE AIBS, AMERICAN INSTITUTE OF
BIOLOGICAL SCIENCES, RUNS
SCIENCE COMMUNICATIONS BOOT
CAMP, EVERY YEAR.
AND THEN THEY ALSO ORGANIZE
STRICT VISITS TWICE A YEAR, ONCE
IN SPRING AND FALL, THAT ALLOWS
YOU TO MEET YOUR LOCAL
CONGRESSMEN AND SOMETIMES IN
WASHINGTON COUNTER PARTS
INCLUDING PEOPLE HIGH UP IN THE
FOOD CHAIN.
SO IT IS A GREAT RESOURCE, TO
STAY ON TOP OF.
THE NASEM HAS THESE MASSIVE
PUBLICATIONS, PUT TOGETHER BY
EXPERTS WHO PARTICIPATE IN ROUND
TABLES PLENARY SESSIONS WORKING
GROUPS, WORKSHOPS AND SO ON AND
SO FORTH, THIS INCREASE WILL OF
COURSE WHEN YOU ARE Ph.D. TO
READ ON THE DOCUMENTS, THE PLUS
IS THAT THE FRONT OF DOCUMENT
USUALLY HAVE A NICE EXECUTIVE
SUMMARY TO CAPTURE WHAT IS IN
THAT DOCUMENT.
RECENT PUBLICATIONS WILL BE
FOCUSED ON ISSUES LIKE THE COVID
PANDEMIC, GLOBAL HEALTH ISSUES,
INEQUITIES ABOUT VACCINES SO
FORTH, SO THAT'S A GREAT
RESOURCE TO STAY ON TOP OF AND
FIND OUT WHAT'S HAPPENING IN
THOSE POLICY FIELDS.
THE PCAST IS ONE RESOURCE I
USUALLY FOLLOW MOST OFTEN ON
REGULAR BASIS AS MY SCHEDULE
ALLOWS.
BASICALLY THE PCAST CONSISTS OF
VOLUME FROM FEDERAL GOVERNMENT
CHARGED WITH MAKE POLICY
RECOMMENDATIONS TO THE PRESIDENT
AND WHITE HOUSE.
OFTEN THERE ARE LISTENING
SESSIONS WHERE THE LAY PUBLIC
CAN PARTICIPATE AND THERE IS
ALSO AN OPPORTUNITY TO MAKE YOUR
VOICE HEARD.
NOW, THIS IS A VERY BUSY SLIDE
AND NADINE TOUCHED ON THESE
PREVIOUSLY BUT THE TWO THINGS
THAT I WANT TO POINT OUT ON THIS
SLIDE ARE THE SCIENCE POLICY
STUDENT GROUPS ON THE LEFT WHICH
IS A GREAT VENUE FOR YOU TO
PARTICIPATE IN.
AND THEN I ALSO WANT TO TALK A
LITTLE BIT MORE ABOUT SCIENCE
OUTREACH AND COMMUNICATION ON MY
NEXT SLIDE.
OF COURSE WE'LL HAVE THE PDF
VERSION OF THIS HAND OUT TO GO
THROUGH THIS SLIDE IN MORE
DETAIL.
NEXT PLEASE.
SO IN TERMS OF SCIENCE OUTREACH
AND COMMUNICATION, IT MUST BE
CLEAR TO YOU BY THIS POINT THAT
NOT ONLY DO YOU NEED TO BE ABLE
TO READ WELL WRITE WELL RESEARCH
WELL ANALYZE WELL, YOU NEED TO
BE ALSO ABLE TO TALK AND
INTERACT WITH DIVERSE
STAKEHOLDERS AND POLICY MAKING
PROCESS.
ON ONE HAND YOU HAVE ALL THESE
DECISION MAKERS WHO ARE
ABSOLUTELY BUSY AND DON'T HAVE
EXPERTISE IN ALL THESE AREAS AND
ON THE OTHER HAND YOU HAVE THE
LAY PUBLIC THAT YOU HAVE TO
BREAK DOWN ALL THIS TECHNICAL
JARGON INTO SIMPLE BITS OF
INFORMATION TO ANALYZE AN
SYNTHESIZE.
SO SOME AVENUES TO IMPROVE
SKILLS IN THESE DOMAINS ARE THE
AAAS LOCAL SCIENCE ENGAGEMENT
NETWORK, THIS IS STILL IN
PRELIMINARY STAGE, THEY STARTED
THIS SOMETIME LAST YEAR BUT IT
IS SPREADING ACROSS AND SO THAT
IS ONE WAY TO GET IN TOUCH WITH
LOCAL SCIENTIFIC COMMUNICATION
AND OUTREACH ACTIVITIES.
YOU CAN ALSO BE A GUEST REVIEWER
OR EDITOR ON THE OFFICE OF
SCIENCE TECHNOLOGY POLICY
INITIATIVE EDITORIAL BOARD.
YOU GET TO WRITE ON SUBJECTS OF
YOUR CHOICE, IT IS NOT VERY TIME
INTENSIVE AND IT IS
FUNDAMENTALLY A VOLUNTARY
SITUATION WHERE WHEN TIME
PERMITS YOU ARE ABLE TO WRITE
AND PARTICIPATE.
FOREFRONT MEDIUM SCITECH
FOREFRONT IS AN AVENUE TO PUBLIC
TOPICS OF YOUR INTEREST, AND I
WANTED ALSO BRING TO YOUR
ATTENTION THE JOURNAL OF SCIENCE
POLICY AND GOVERNANCE.
THE JSPG RUNS SEVERAL SCIENCE
POLICY MEMO COMPETITIONS
THROUGHOUT THE YEAR AND THEY
ALSO HAVE A LOT OF EDUCATIONAL
AND RAINING ACTIVITIES AND
WEBINARS THAT WILL GET YOU UP TO
SPEED IN TERMS OF WHAT YOU NEED
TO DO FOR YOUR NEXT STEPS IN
YOUR SCIPOL CAREER.
THERE IS ALSO AN OPPORTUNITY TO
BECOME AN ASSOCIATE EDITOR AND
THEN THE LAST TWO RESOURCES THAT
I WANT TO BRING TO YOUR
ATTENTION IS THE ALAN ALDA
CENTER FOR COMMUNICATING
SCIENCE, THERE IS AN IMPROMPTU
WORKSHOP THAT ALLOWS YOU TO
CREATE A COMPELLING STORY
TELLING NARRATIVE.
WIKIPEDIA YOU KNOW YOU CAN BE A
EDITOR AND SCIENTIST AND
SCHOLARS PROGRAM AND THE LAST
TWO RESOURCES ARE THINGS NSPN
SPONSORED CONTENT.
SO THE LAST THING I WANT TO
POINT OUT UNFORTUNATELY DUE TO
PAUCITY OF TIME WE ARE NOT ABLE
TO DO THIS INTERACTIVELY AT THIS
POINT BUT THERE IS THIS LINKEDIN
10, 10, 10 EXERCISE UCSF PUT
TOGETHER.
THIS IS A SIMPLE EXERCISE FOR
GRADUATE STUDENTS AND POST DOCS
WHO ARE SEEKING CAREERS.
AND WHEN YOU DO THIS I STRONGLY
SUGGEST YOU DO, YOU ARE ABLE TO
MAP A PART THAT ALLOWS YOU TO
LAUNCH YOUR SCIPOL CAREER.
SO THE LAST THING I WANT TO DO
IS IN THE END I WOULD LIKE TO
THANK THE ORGANIZERS OF THE
PROGRAM, ALLOWING MY COLLEAGUES
ON THIS CALL, PARTICULAR LISA
BAND ALEXANDRA WHO ARE GRACIOUS
-- PARTICULARLY, SAHBA AND ALEX
WHO ALLOWED US TO PARTICIPATE.
NSPN ADVOCACY CHAIR WHO ACTUALLY
INVITED US TO THIS PROJECT AND
COORDINATING THE TIE UPS
NECESSARY FOR US TO PARTICIPATE.
AND MY WONDERFUL COLLEAGUES FROM
NSPN, JENNIFER AND NADINE, WHO
WORK DILIGENTLY, PATIENTLY
BEHIND THE SCENES TO PUT ALL
THIS PRESENTATION TOGETHER
DESPITE THEIR BUSY SCHEDULES,
TRAVEL IN THE CASE OF JENNIFER
AND MANY OTHER PERSONAL AND
PROFESSIONAL COMMITMENTS.
SO THANK YOU ALL AND WE WOULD BE
HAPPY TO TAKE ANY QUESTIONS YOU
MIGHT HAVE.
I ALSO WANT TO MENTION THAT
THERE IS A PANEL DISCUSSION THIS
AFTERNOON FROM 2 TO 3, IT IS A
GROUP DISCUSSION WHERE WE WILL
BE ABLE TO ADDRESS A FEW MORE
QUESTIONS IN DETAIL, THAT WE ARE
NOT ABLE TO ADDRESS HERE IN THIS
Q&A.
THANK YOU SO MUCH FOR THE
OPPORTUNITY.
>> THANK YOU, DR. MAHNKALI, DR.
WELLINGTON AND Ph.D. CANDIDATE
BROWN FOR YOUR TALKS TODAY.
AS WE TRANSITION TO Q&A, PLEASE
USE THE RAISE HAND FEATURE AND
WE WILL CALL AND ASK YOU TO
UNMUTE TO ASK YOUR QUESTION.
ALTERNATIVELY PLEASE FEEL FREE
TO PUT YOUR QUESTIONS INTO THE
CHAT BOX AND WE CAN READ THEM
DIRECTLY.
SO I WANT TO START WITH THE
FIRST QUESTION TODAY.
SO I'M CURIOUS HOW WITH
SCIENTIFIC EVIDENCE INCORPORATED
INTO PRESENTATIONS OF AND
DECISION MAKING ABOUT SO CALLED
WICKED PROBLEMS WHICH LACK CLEAR
DEFINITION AND CANNOT BE SOLVED
DEFINITELY?
>> IT DEPENDS ON
AGAIN THE SCOPE OF THE PROBLEM,
WICKED PROBLEMS FOR PEOPLE WHO
AREN'T FAMILIAR WITH IT IS A
TERM USED TO DESCRIBE JUST
GENERAL SOCIETAL PROBLEMS THAT
ARE INTRACTABLE, VERY DIFFICULT
TO RESOLVE, HAVE A LOT OF
COMPETING INTERESTS AND
COMPETING VOICES.
SO AS I HIGHLIGHTED ON EARLIER
SLIDE, COMMUNICATION AND THE
ABILITY TO DISTILL INFORMATION
ESPECIALLY TO PEOPLE UNFAMILIAR
WITH THAT INFORMATION IS
INCREDIBLY IMPORTANT.
AND I'M JUST GOING TO HARP ON
THIS AGAIN BECAUSE AGAIN COMING
OUT OF GRAD SCHOOL STUDYING PEER
SCIENCE THIS WAS SOMETHING THAT
I WAS NOT VERY SKILLED IN BUT
AGAIN IT IS ALSO REALLY
IMPORTANT, YOU MAY HAVE AN
OPINION ON A PARTICULAR ISSUE,
WE ALL HAVE OPINIONS ON COVID,
WE HAVE OPINION ON MASKING AND
CLIMATE CHANGE, ET CETERA BUT
WHAT YOU HAVE TO UNDERSTAND IS
THERE ARE VALID REASONS AN
MOTIVATIONS BEHIND OTHER
PEOPLE'S OPINIONS.
SOFT IT IS NOT ENOUGH TO SAY
WELL THIS IS WHAT THE SCIENCE
SAID, THIS IS FACT AND THEREFORE
THIS IS WHAT YOU HAVE TO DO.
YOU HAVE TO BE ABLE TO
COMMUNICATE WITH PEOPLE, BE
DIPLOMATIC, PATIENT, RESPECTFUL,
IN OTHER WORDS TO GET PROGRESS
ON THESE PROBLEMS BECAUSE
WITHOUT ADEQUATE COMMUNICATION
WITHOUT UNDERSTANDING AND
RESPECT YOU MAY KNOW HOW TO
SOLVE THE PROBLEM THAT IS
PARTICULARLY DIFFICULT BUT YOU
WILL NOT BE ABLE TO GAIN
CONSENSUS IN ORDER TO PUSH THESE
SOLUTIONS FORWARD.
>> I THINK NADINE HIT THE NAIL
ON THE HEAD THERE, I WAS GOING
TO SAY SOMETHING SIMILAR AND
INSTEAD I WILL ADD ON.
ALSO COMING OUT OF MORE OF A
BENCH SCIENCE, IT IS REALLY
IMPORTANT TO REMEMBER THE SOCIAL
SCIENTISTS THE PSYCHOLOGISTS,
PEOPLE WHO STUDY MORE ON THE
HUMANITIES SIDE BECAUSE WE MAY
KNOW HOW TO MAKE THE VACCINE BUT
WE DO NOT NECESSARILY KNOW HOW
TO GET PEOPLE TO TAKE THE
VACCINE THAT WE MAKE AND I THINK
THE RECENT WORLDWIDE EVENTS HAVE
MADE THAT ABUNDANTLY CLEAR.
WE CAN MAKE DRUGS, WE CAN MAKE
TREATMENTS BUT WHO IS GOING TO
BE THE ONE FOR EXAMPLE IN THE
CLINICAL SETTING THAT IS GOING
TO HELP PATIENTS UNDERSTAND WHAT
IS THE BEST CHOICE FOR THEIR OWN
HEALTHCARE.
SO AGAIN AS NADINE SAID, THERE
ARE OTHER VALID VIEW POINTS,
THOSE OTHER VIEW POINTS ARE
PROBABLY ALSO BACKED BY SCIENCE,
JUST OF A KINDS WE MAY NOT BE
USED TO SEEING AT THE DAY AND
ARE WORTH INTEGRATING INTO
WHATEVER THE FINAL SOLUTION IS
TO MAKE IT AS STRONG AS
POSSIBLE.
>> PLEASE FEEL FREE TO PUT YOUR
QUESTIONS IN THE CHAT.
I ALSO HAVE ANOTHER QUESTION
THAT I LIB VERY USEFUL FOR THE
AUDIENCE.
SO WHAT STAGES DURING THE
DEVELOPMENT OF POLICY DOES
SCIENTIFIC EVIDENCE HAVE
GREATEST IMPACT ON THE DECISIONS
MADE?
>> WE CAN GO IN A TIME LINE BUT
SCIENCE IS INVOLVED IN EVERY
STAGE AND I THINK YOU DON'T EVEN
KNOW WHAT THE POLICY PROBLEMS
ARE UNLESS YOU HAVE DATA TO LOOK
AT TO ASK THE QUESTION.
THIS IS THE CHICKEN EGG I FEEL
LIKE BECAUSE EVERY POLICY THAT'S
IMPLEMENTED USUALLY HAS SOME
KIND OF OUTCOME METRIC THAT AT
LEAST CURRENTLY IS BUILT INTO
THE POLL CIRCUMSTANCES HOW DO
YOU KNOW WHETHER IT IS A
SUCCEEDS OR FAILS CLINICAL
TRIALS HAVE END POINTS THEY ARE
EXPECTED TO MEET AND THEY MAY OR
MAY NOT MAKE THEM BUT THERE IS
DATA AVAILABLE.
THE SAME IS TRUE FOR POLICY.
SO YOU CAN LOOK AT WHAT WAS THE
EXPECTED OUTCOME MEASURE, DID WE
HIT IT, OR NOT, WHY OR WHY NOT.
IT IS NOT JUST A ONE AND DONE,
IT IS A CONSTANTLY EVOLVING
PROCESS.
SO DATA AND SCIENCE IS USED AT
EVERY PART OF THAT.
>> I WANT TO ADD TO WHAT
JENNIFER MENTIONED, SHE
MENTIONED SEVERAL IMPORTANT
POINTS.
FIRST OBVIOUSLY YOU WOULD LIKE
TO GET INVOLVED AT THE OUTSET.
BEFORE POLICY FORMULATION IS
HAPPENING.
BUT IT SO HAPPENS THERE WILL BE
TIMES WHEN NOTHING FOR YOU TO GO
BY.
YOU HAVE TO LEARN ON THE FLY.
HERE IS AN EXAMPLE IS THE
VACCINES AND THE COVID PANDEMIC
FOR LONG TIME IT WAS NOT CLEAR
WHICH VACCINE WOULD WORK HOW IT
WOULD WORK WHEN WE NEED TO TAKE
OUR SHOTS, WHAT THE FINE LINE
IS, AND WHEN YOU SHOULD GET YOUR
BOOSTER FOR EXAMPLE.
FROM AS DATA STARTED FILTERING
IN IN TYPES OF VACCINES ALL THE
COMPLICATIONS THAT AROSE FROM
THE VACCINES, ON THE FLY YOU
HAVE TO IMPROVISE AND BASICALLY
MAKE YOUR POLICY
RECOMMENDATIONS.
IT IS VERY COMFORTABLE TO BLAME
THE CDC, THE NIH OR
ADMINISTRATION IN THE OFFICE BUT
THE PROBLEM IS, THAT THE NATURE
OF THE PROBLEM IS SUCH THAT
SOMETIMES IT IS INFEASIBLE TO
HAVE ALL THE POLICY INFORMATION,
ALL THE DATA TO MAKE ALL THOSE
CONCRETE CAST IN STONE
RECOMMENDATIONS SO SOMETIMES WE
HAVE TO IMPROVISE ON THE FLY.
I WOULD SAY FROM THE TIME THE
PANDEMIC STARTED FOR EXAMPLE TO
WHERE WE ARE NOW WE HAVE LEARNED
A LOT AND YOU ARE SEEING THE
IMPACT OF ALL THOSE NEW POLICY
RECOMMENDATIONS FROM THINGS THAT
WE HAVE LEARNED OVER THE LAST
COUPLE OF YEARS.
SO THE IMPORTANT THING IS TO
STAY NIMBLE AND BE FOCUSED ON
THINGS DATA AS IT COMES IN.
AND THEN MAKE THE APPROPRIATE
REMEDIAL CHANGES.
>> THAT IS ACTUALLY A REALLY
GREAT POINT.
ON THAT NOTE HOW DO YOU THINK
SCIENTISTS AND POLICY MAKERS
COULD BEST RECOGNIZE AND CONVEY
THE LIMITATIONS OF SCIENTIFIC
ADVICE?
>> THAT IS A TOUGH CALL, SAHBA,
AS I'M LEARNING AS PHYSICIAN
SCIENTIST AND CURRENTLY SOMEONE
INVOLVED IN GLOBAL HEALTH, IT IS
A CHALLENGE BECAUSE THERE ARE A
LOT OF BARRIERS, ONE IN TERMS OF
HEALTHCARE ACCESS, BARRIERS IN
TERMS OF HEALTHCARE INEQUITIES,
THERE IS LANGUAGE BARRIER,
IDEOLOGY BARRIER AND
FUNDAMENTALLY A COMMUNICATION
BARRIER.
LAW MAKERS HAVE ALL THESE
CONSTITUENCIES THEY HAVE TO
CATER TO, AND SO SOME OF THEIR
DECISION MAKING PROCESSES YOU
ARE SEEING ACROSS THE U.S. IS
DRIVEN NOT SO MUCH BY SCIENCE AS
IT IS BY WHAT THEY ARE HEARING
FROM THEIR WILLCAL
CONSTITUENCIES SO IT IS A
CHALLENGE.
IT IS A ONGOING THING.
THINGS ARE BETTER IN THE LAST
COUPLE OF YEARS, EVEN THOSE WHO
FOR EXAMPLE ARE ON ONE SIDE OF
THE ISSUE, MOW AS MORE DATA HAS
COME IN AS WE HAVE MORE
INFORMATION AND AS WE HAVE ALSO
SEEN REAL LIFE IMPLICATIONS OF
PANDEMIC IN TERMS OF HEALTHCARE
JOB LOSS GRAVE RESIGNATIONS,
THERE'S A HOST OF ISSUE, THEY
ARE ABLE TO NOW UNDERSTAND AND
MAKE THE NECESSARY CHANGES BUT
IT IS A PROCESS.
I THINK WE HAVE MADE PROGRESS
BUT WE STILL HAVE A LONG WAY TO
GO.
>> ANOTHER THING I WANT TO
QUICKLY TOUCH ON IS AGAIN, THE
FOUR CATEGORIES OF SCIPOL
PROFESSIONAL THAT PL MENTIONED
IN HIS BOOK.
I WANT TO WITH RESPECT TO LAW
MAKERS POLICY MAKERS, KNOWING
THE LIMITATIONS IN SCIENTIFIC
EVIDENCE OBVIOUSLY WITH THEIR
BACKGROUND AND EDUCATION, THAT
THEY ARE NOT ABLE TO DETERMINE
THOSE LIMITS THAT'S WHY EARLIER
WHEN I MENTIONED DEPENDING ON
THE ROLE YOU CHOOSE, YOU CANNOT
TRY TO STRADDLE BEING AN HONEST
BROKER AS WELL AS ISSUED A VOW
KATE BECAUSE YOU NEED TO BE
HONEST AND FORTHRIGHT ABOUT THE
INFORMATION YOU ARE PROVIDING
AND WHAT YOUR MOTIVATIONS ARE.
IF YOU DECIDE YOU WANT TO BE
THAT PERSON WHO COMMUNE CASE THE
LIMITATIONS AND THE OUTCOMES OF
SCIENTIFIC RESEARCH THEN THAT IS
GOING TO BE YOUR ROLE.
IF YOU SWITCH BETWEEN TWO OR
YOUR YOU ARE TELLING ONE PERSON
THIS BECAUSE YOU WANT THEM TO
ACT A CERTAIN WAY BUT BEING
HONEST BROKER WITH SOMEBODY ELSE
WILL DEVOIR YOUR TRUST
WORTHINESS AND ALSO DEVOIR YOUR
CAREER.
SO WITH RESPECT TO HOW THEY
KNOW, THAT IS THE ROLE THAT'S
THE ROLE TO GET PEOPLE TO GO
INTO, THAT'S ONE OF THE ASPECTS
OF SCIENCE POLICY THAT ARE
REALLY IMPORTANT.
>> THIS IS A REALLY INTERESTING
QUESTION.
WWE ARE ALL THOUGHT OF ANSWERS
FROM A SLIGHTLY DIFFERENT ANGLE.
WHAT CAME TO MIND FOR ME WAS
CONCEPT OF UNCERTAINTY, IN
SCIENCE WE DON'T SHOW GRAPHS
WITHOUT ERROR BARS.
WHAT IS THE LIKELIHOOD THAT THE
NUMBERS WE ARE ACTUALLY SHOWING,
WHAT IS THE RANGE OF POSSIBLE
OUTCOMES, BUT THAT IS NOT A
CONCEPT THAT'S VERY WELL
UNDERSTOOD OUTSIDE OF THE
SCIENCES.
AND YOU WANT TO TALK ABOUT
POLICY FOR SCIENCE, THIS GOES
BACK TO EDUCATION SYSTEMS WITHIN
THE U.S. AND HOW MUCH STATISTICS
TRAINING PERSON YOU ARE TALKING
TO HAS AS WELL AS ROLE OF THE
MEDIA, HOW MANY TIMES HAVE WE
ALL SEEN HEADLINES, SCIENCE WAS
WRONG BECAUSE THERE WAS AN
ARTICLE THAT CAME OUT THAT SAID
THIS IS THE BRAND NEW TREATMENT
FOR THIS.
THIS NEW iPHONE IS THE BEST.
AND WERE THEY WRONG AT THE I'M?
NO BUT WHAT HAPPENED IS WE
ACQUIRED MORE DATA THAT MADE US
CHANGE THE OUTCOME WE ARE
SUGGESTING MOST LIKELY, THAT CAN
BE VERY HARD FOR PEOPLE NOT IN
SCIENCE TO UNDERSTAND AND SO IT
REALLY COMES DOWN TO HOW IT IS
PORTRAYED.
PEOPLE TO SCIENTISTS DOCTORS
BECAUSE THEY WANT AN ANSWER AND
IN SCIENCE WE TEND NOT TO GIVE
ANSWERS WE JUST ASK MORE
QUESTIONS.
AND I THINK UNDERSTANDING THAT
SCIENCE IS AN EVOLUTION OF
ANSWERS WILL HELP WITH THAT BUT
THAT IS A GLOBAL ISSUE THAT
DOESN'T HAVE ONE EASY ANSWER.
>> JUST TO REACTS TO WHAT
JENNIFER SAID FUNDAMENTALLY WHEN
YOU BREAK IT ALL DOWN, IT COMES
DOWN TO TWO THINGS.
MANAGING THE POLITICAL PROCESS
ON ONE SIDE, AND THE PUBLIC
PERCEPTION ON THE OTHER SIDE.
AS A SCIENTIST YOU ARE RIGHT IN
BETWEEN.
AND YOU ARE TRYING TO GET BOTH
OF THESE ON YOUR SIDE.
SO IT IS A CHALLENGE.
IT IS MUCH BETTER NOW BECAUSE
PEOPLE HAVE UNDERSTOOD THROUGH
THIS PANDEMIC ABOUT HOW THIS
PROCESS WORKS AND I THINK GOING
FORWARD YOU WILL SEE SEVERAL
TOOLS AND INTERVENTIONS THAT
WILL GO TO FACILITATE THAT
PROCESS.
>> THANK YOU.
SRI.
WE ARE GOING TO TAKE A SHORT
FIVE MINUTE BREAK
I AM SO EXCITED TO INTRODUCE OUR
KEYNOTE SPEAKER TODAY, DR. CORY
BARGMANN, SHE IS THE REASON I
DECIDED TO PURSUE SCIENCE SO
ACTUALLY NEAR C,RI IS AN
INTERNATIONALLY RECOGNIZED
NEUROBIOLOGIST AND GENETICIST
AND LEADS THE ZUCKERBURG SCIENCE
NETWORK. SHE IS THE HEAD OF THE
LULU ANTHONY WAYNE LABORATORY AT
NEURAL CIRCUITS BEHAVIOR AT THE
ROCKEFELLER UNIVERSITY NEW YORK.
DR. BARGMANN IS MEMBER OF THE
NATIONAL ACADEMY OF SCIENCES AND
THE AMERICAN PHYSIOLOGICAL
SOCIETY. SHE RECEIVED THE 2012
PUBLIC PRIZE IN NEUROSCIENCE AND
THE 2013 BREAK THROUGH PRIZE IN
WEB SCIENCES. AMONG MANY OTHER
SCIENTIFIC HONORS. SHE IS ALSO
CO-CHAIR OF THE NATIONAL
INSTITUTES OF HEALTH COMMITTEE
THAT SET GOALS AN STRATEGIES FOR
PRESIDENT OBAMA'S BRAIN RESEARCH
THROUGH ADVANCING INITIATIVE
NEUROTECHNOLOGIES.
ALSO KNOWN AS THE BRAIN
INITIATIVE. DR. BARGMANN IS
FORMER HOWARD HUGHES MEDICAL
INSTITUTE INVESTIGATOR AND HOLDS
A Ph.D. IN BIOLOGY FROM THE
MASSACHUSETTS INSTITUTE OF
TECHNOLOGY. PLEASE JOIN ME
WELCOMING DR. CORI BARGMANN WITH
US TODAY.
>> FIRST, MANY, MANY THANKS TO
ALEX AND SAHBA FOR INVITING ME
TO SPEAK TODAY.
I'M NOT AN EXPERT ON POLICY
ADVOCACY WHEN THEY INVITED ME
THEY SAID THAT THEY ENCOURAGED
ME TO THINK ABOUT H FROM MY
PERSPECTIVE OF MY OWN CAREER AND
WORK THAT I HAVE DONE AND GIVE
PERSONAL EXAMPLES ARE WHERE I
THINK ADVOCACY AND SCIENCE HAS
BEEN HELPFUL, WHAT KINDS OF
THINGS I THOUGHT HAD WORKED, AND
SOME PRINCIPLES THAT MIGHT BE
BROUGHT ON TO THE REST OF YOU.
I'M ALREADY LEARNED FROM THE
SYMPOSIUM. I AM LOOKING FORWARD
TO LOOKING UP THE 10, 10, 10
PRINCIPLES AND IN GUIDING MY OWN
STUDENTS. I HOPE THAT WE HAVE A
GOOD TIME TODAY TALKING. THIS
FIRST SLIDE IS ALEXANDRA AND
SAHBA SAID TELL US ABOUT YOUR
LIFE. THIS IS MY LIFE IN ONE
SLIDE.
I GREW UP IN ATHENS, GEORGIA, I
HAVE THREE SISTERS, WE ARE ALL
STILL VERY CLOSE. YOU CAN TRY TO
GUESS WHICH IS ME IN THE PICTURE
ON THE TOP LEFT. I ATTENDED THE
UNIVERSITY OF GEORGIA WHERE
THAT'S THE ENTRANCE TO THE
CAMPUS THERE IN THE MIDDLE.
WHERE I MAJORED IN BIOCHEMISTRY
AND FIRST FELL IN LOVE WITH
SCIENCE AND WITH THE LAB. AND
WHEN I WAS THERE THE UNIVERSITY
OF GEORGIA FOOTBALL TEAM WON THE
NATIONAL CHAMPIONSHIP IN THE
NCAA FOOTBALL WHICH IS LAST TIME
THEY WON IT UNTIL THEY WON IT
THIS YEAR. SO YOU CAN GO BACK TO
FIGURE WHEN THAT WAS. I WENT
FROM THERE TO MIT AT THE WHITE
HEAD INSTITUTE WITH DR. ROBERT
WINEBERG IN THE MIDDLE, BOB WAS
MY Ph.D. ADVISOR, AND IT WAS
THE LAB THAT WAS STUDYING
MOLECULAR BIOLOGY OF CANCER AND
IT WAS A VERY EXCITING TIME
WHICH MANY FIRST GENES WERE
IDENTIFIED THAT HAD IMPORTANT
ROLES IN THE GENESIS OF HUMAN
CANCERS LIKE THE RAS GENES, THE
NEUROBLASTOMA GENE, AND RETINAL
BLASTOMA GENE AND FROM MY OWN
WORK, THE WORK NEUROBLASTOMA
GENE NEW ALSO KNOWN AS HER 2
WHICH IS IMPLICATED IN HUMAN
BREAST CANCER. SO I STATE STAYED
AT MIT AS POST DOC BUT MOVED
ACROSS THE STREET WHERE MY POST
DOC ADVISOR WAS DR. ROBERT
CORBETTS AND I WAS ABLE TO THERE
BEGIN A STUDY ON A TOPIC THAT
HAD ALWAYS FASCINATING TO ME THE
NATURE OF THE BIOLOGY OF THE
BRAIN. AND THAT WAS THE BASIS OF
MY POST-DOCTORAL WORK WITH BOB
AND IT HAS BEEN THE WORK I
CONTINUED SINCE IN 30 YEARS OF
INDEPENDENT CAREER. FIRST SHOWN
IN THE BOTTOM LEFT AT THE
UNIVERSITY OF CALIFORNIA SAN
FRANCISCO MEDICAL SCHOOL WHERE I
HAD A LAB WHERE I LOOKED OUT AT
SUNSET OVER THE PACIFIC FROM MY
OFFICE WINDOW. AND THEN IN 2004
I MOVED TO ROCKEFELLAR
UNIVERSITY IN NEW YORK WHERE I
AM TALKING FROM YOU TODAY IN
THIS BUILDING THAT LOOKS OUT
OVER THE EAST RIVER SO I
MAINTAINED MY WATER VIEW. I CAME
HERE IN PART OF ROCKEFELLAR, A
GREAT INSTITUTION AND IN PART TO
BE WITH THIS GUY HERE, MY
HUSBAND RICHARD AXEL, PROFESSOR
OF NEUROSCIENCE AT COLUMBIA
UNIVERSITY ALSO IN NEW YORK. SO
I WAS TAUGHT MANY MY JOB NOT TO
TALK ABOUT MY OWN LAB'S WORK BUT
I HAVE TO PUT AT LEAST ONE SLIDE
OF THAT BECAUSE THIS IS WHO I AM
AND HOW I IDENTIFY.
I'M A SCIENTIST, BASIC
SCIENTIST. IT DOESN'T GET MORE
BASIC THAN THE KIND OF WORK THAT
I DO. I STUDIED THE WAY THE
NERVOUS SYSTEMS WORKS, STARTING
FROM LEVEL OF MOLECULES AND
GOING UP TO ORGANISMS AND EVEN
POPULATIONS, AND I DO THAT IN
THE NEMATODE C ELEGANS AND THE
REASON I WAS DRAWN TO THAT AS
POST DOC AND STAYED IN IT IS THE
FACT THAT YOU REALLY CAN MOVE
BETWEEN LEVELS AND UNDERSTAND
WHAT IS HAPPENING ANOTHER EACH
STEP WHETHER THAT IS A
PARTICULAR MOLECULE, THE NEURON
IN WHICH IT FUNCTIONS THE CELL
BIOLOGICAL PROCESS THAT IT
AFFECTS HOW THAT INFORMATION
PROPAGATES THROUGH CIRCUIT, HOW
IT AFFECTS ANIMAL'S BEHAVIOR AND
HOW IT CHANGES OVER EVOLUTIONARY
TIME. I FIND IT SO MUCH EASIER
PROBLEM THAN THE PROBLEM OF
COURSE WE ARE ALL MOST EXCITED
ABOUT IS NEUROSCIENCE. JUST
BASIS OF THE HUMAN BRAIN.
HERE ARE THE KINDS OF APPROACHES
MOLECULAR GENETIC APPROACHES TO
STUDY MOLECULE AND BIOLOGICAL
CONTEXT, WE STUDIED THE FUNCTION
OF SENSORY NEURONS AND ASSIGNED
TO PARTICULAR BEHAVIORS AND
PLASTICITY, HERE SHOWN IN THE
MIDDLE IS SET OF TRACES LOOKING
AT SYNAPTIC VESICAL RELEASE, WE
LOOK AT FUNCTION OF INTEGRATING
NEURONS ON THE RIGHT WHERE WE
FOLLOWED THINGS THROUGH THE
CIRCUITS TO UNDERSTAND HOW
INFORMATION IS PROPAGATED. WE DO
A LOT OF WORK IN HIGHLY
QUANTITATIVE BEHAVIORAL
ANALYSIS, THE SLIDE ON THE
BOTTOM LEFT IS BASICALLY A SLIDE
SHOWING THE BEHAVIOR OF 100 WILD
TYPE ANIMALS AND 50 MUTANT
ANIMALS ACROSS THE ENTIRE LIFE
SPAN SHOWING DIFFERENCES, IN
THEIR OVERALL AND ACTIVITY
LEVELS AND SUBTLE DETAILS OF
THEIR ACTIVITY OVER TIME AND
FINALLY WE DO WORK ON WHAT WE
THINK OF AS CIRCUIT CRACKING
UNDERSTANDING HOW THE DIFFERENT
CONNECTIONS BETWEEN NEURONS
WORK, AND HOW MODIFIED BY
PARTICULARLY NEUROMODULATORS THE
MAJOR FOCUS OF MY LAB'S WORK AT
THE MOMENT.
THE THING I LOVE
ABOUT THE LAB IS THE QUESTIONS
WE GET TO ASK, THE PROBLEMS WE
TRY TO SOLVE, OUR ABILITY TO
RELATE THOSE UPWARD TO MORE
COMPLEX PROBLEMS AND DOWNWARD TO
MOLECULAR LEVEL BUT ALSO THE
THING I LOVE ABOUT THE LAB IS
WORKING WITH SMART PEOPLE AND
DEVELOPING NEW CREATIVE IDEAS
AND HERE ARE A COUPLE OF
DIFFERENT LAB PICTURES FROM 15
YEARS OR SO SHOWING LAB MEMBERS
AND THEIR SUCCESS IS MY SUCCESS
AND SOMETHING I TAKE GREAT
HAPPINESS IN. SEW THAT IS MY OWN
PERSONAL WORK. BUT I ALSO WANT
THE TALK HOW I THINK ABOUT THE
SCIENTIFIC PROCESS AND ONE THING
I THINK ABOUT A LOT IS HOW MUCH
SHARED RESOURCES AND TECHNOLOGY
DRIVE SCIENCE, THAT'S VERY MUCH
TRUE IN THE C ELEGANS FIELD I
WORK BUT ALSO IN MANY OTHER
FIELDS OF SCIENCE.
RESOURCES WIRING DIAGRAM OR
GENOME PROJECT OR THINGS
EVERYONE TURNS TO EVERY DAY, THE
DIFFERENT METHODS LIKE LASER
DEVELOPMENT, THAT LED TO
MICROSCOPY, CONFOCAL AND
MULTI-PHOTON MICROSCOPY,
MICROFLUIDICS IN BIOLOGICAL
SCIENCES GENETICALLY CODED
INDICATORS INCLUSIONING CALCIUM
AND VOLTAGE AND SYNAPTIC VESICAL
RELEASE AND THE ABILITY TO
REGULATE NEURAL ACTIVITY THROUGH
OPTO GENETICS. WE ALSO SEE
IMPORTANT IDEAS EMERGING INTO
SCIENCE FROM COMPUTATIONAL
METHODS FROM CHEMICAL BIOLOGY
AND ELECTRICAL ENGINEERING. THIS
IS SOMETHING THAT I TAKE WITH ME
INDEPENDENT OF MY OWN WORK. IT
IS AN INTEREST OF MINE, I'M NOT
MYSELF A TECHNOLOGY DEVELOPER, I
DON'T BUILD NEW MICROSCOPES BUT
OFTEN A EARLY ADOPTER BECAUSE IT
IS A GOOD SYSTEM FOR TRYING NEW
THINGS BUT RELATIVELY LOW
INVESTMENT SO I INTERACT WITH
PEOPLE IN THAT COMMUNITY A LOT
AND IT WAS MY ENTHUSIASM FOR
THAT COMMUNITY AND A LITTLE BIT
OF BEING ONE STEP AWAY FROM IT
AND NOT HAVING SO MUCH AT
PERSONAL ADVOCACY INTEREST
HEARING ABOUT THE LAST SESSION.
THAT I WAS ULTIMATELY ASKED TO
PARTICIPATE IN THE PLANNING OF
THE BRAIN INITIATIVE UNDER
PRESIDENT OBAMA. SO THIS WAS
ANNOUNCED IN 2013 AND ITS GOAL
WAS TO ADVANCE BRAIN RESEARCH BY
ADVANCING INNOVATIVE
NEUROTECHNOLOGY. SO VERY MUCH A
TECHNOLOGY INTEREST WHICH IS
SOMETHING I SHARE. A SPECIFIC
IDEA WHAT WE NEEDED WAS TO GIVE
SCIENTISTS THE TOOLS THEY NEED
TO GET A DYNAMIC PICTURE OF THE
BRAIN IN ACTION. THAT WAS THE
CHARGE WE HAD WHEN WE STARTED
THIS IN 2013. WITH AN INITIAL
BUDGET IN THE FIRST YEAR OF $110
MILLION FOR NIH NSF AND DAR PA,
THAT SEEMS LIKE A GENEROUS
STARTING POINT, SEEMED LIKE A
WONDERFUL PLACE TO GET GOING.
WHAT DOES IT MEAN TO BE PUT IN A
ROLE LIKE THIS?
YOU AR WILL HAVE TO ASK SOMEONE
ELSE WHY I WAS PUT MANY THAT
ROLE, WHAT HAPPENED WAS THAT I
WAS PUT TOGETHER AS A BASIC
MOLECULAR NEUROSCIENTIST, VERY
INTERESTED IN TOOL BUILDING WITH
A VERY DIFFERENT KIND OF
SCIENTIST, BILL KNEWSOME SYSTEMS
NEUROSCIENTIST FROM STANFORD
UNIVERSITY, A HARD CORE
ELECTROPHYSIOLOGY WHO WORKS ON
HIGHER ORDER UNDERSTANDING OF
VISUAL PROCESSES IN THE PRIMATE
BRAIN. SO WE REPRESENTED THROUGH
TWO AREAS OF NEUROSCIENCE, THAT
WE SAW COULD BENEFIT FROM THE
APPLICATION OF NEW TECHNOLOGIE TECHNOLOGIE S.
WE WANTED TO THINK ABOUT THE
TECHNOLOGIES THAT WOULD LET YOU
LOOK AT THE DYNAMIC PICTURE OF
BRAIN FUNCTION OVER TIME AND
SPACE. THAT WE THOUGHT THIS WAS
INVOLVE CLASSICAL NEUROSCIENCE
THE KINDS OF THINGS WE DID BUT
INVOLVEMENT OF MANY OTHER
SCIENTISTS FROM FIELDS AS
DIFFERENT AS MATH AND
PSYCHOLOGY. THE FIRST THING WE
HAD TO DO WAS DECIDE WHO COULD
HELP TO DO THIS. THIS IS ONE OF
MY FIRST LESSONS NEVER TRY TO DO
ANYTHING ALONE. THE WORK GET
INVOLVED IN YOUR DECISION MAKING
THE BETTER IT IS. THIS IS A LIST
OF PEOPLE THAT WE INVITED TO AND
AGREED TO JOIN US ON THE
COMMITTEE FOR THE NIH BRAIN
INITIATIVE. IT'S BEEN A YEAR AND
A HALF DECIDING WHAT THE BRAIN
INITIATIVE SHOULD LOOK LIKE AND
HOW IT SHOULD BE ORGANIZED. WE
ALSO INCLUDED NUMBERS OF THE NIH
DARPA NSF AND FDA, TO COME TO
MEETINGS AND BE PART OF OUR
CONVERSATION SO WE CAN MAKE SURE
WE ARE GETTING THE RIGHT
INFORMATION. FROM A GOVERNMENT
PERSPECTIVE AS WELL. SO WE WERE
SCIENTISTS REPRESENTING SCIENCE,
BUT ALSO -- AND WE HAVE KIND OF
A CHARGE WHAT WE WANTED TO DO
WAS TO MAKE THIS UNDERSTANDABLE
BOTH TO OTHER SCIENTISTS SO
SCIENTISTS GET BEHIND IT AND
ALSO TO MAKE IT UNDERSTANDABLE
TO THE GOVERNMENT SO THAT IT
WOULD BE AN AREA THAT WOULD BE
SUPPORTED. THE FIRST THING I
WANT TO SAY ABOUT THIS FROM THE
PERSPECTIVE OF ADVOCACY, AND
POLICY IS THAT I HAVE NEVER HAD
DIFFICULTY EXPLAINING TO A LAY
AUDIENCE OF ANY KIND WHY YOU
WANT TO LEARN MORE ABOUT THE
BRAIN.
MAYBE I'M IN A PARTICULARLY EASY
AREA OF SCIENCE THAT WAY, I
DON'T NECESSARILY TALK TO THEM
ABOUT MY C ELEGANS RESEARCH
RIGHT AWAY BUT YOU CAN TALK --
WE REALLY NEED TO UNDERSTAND THE
BRAIN. IT IS A SOURCE OF OUR
GREATEST STRENGTH, THE MAGIC OF
BEING HUMAN, AND IT IS ALSO THE
SOURCE OF SOME OF OUR GREATEST
WEAKNESSES.
THOSE INCLUDE THE
NEURODEGENERATIVE DISORDERS, THE
THOUGHT AND MOOD DISORDERS,
NEURODEVELOPMENTAL DISORDERS AND
VARIOUS EFFECTS OF INJURY AND
INSULT THAT LEAD TO LONG-TERM
DISABILITY. IF YOU GO THROUGH
THIS LIST EVERY PERSON HAS AN
EXAMPLE IN THEIR OWN FAMILY OF
ONE OF THESE TRAGIC DISORDERS,
AND THE IDEA THAT UNDERSTANDING
HOW THE BRAIN NORMALLY FUNCTIONS
PROVIDE TOOLS TO UNDERSTAND HOW
TO TREAT THESE. IT IS EASY TO
GET ACROSS AND ENGAGES PEOPLE IN
AN IMMEDIATE FASHION. ALLOWS
THEM TO COME WITH YOU FOR THE
NEXT STAGE OF THE PROCESS. WHAT
DID WE WANT TO DO?
TO FOCUS ON CIRCUITING --
CIRCUITS AND NETWORKS BECAUSE
THIS WAS A FIELD WHERE THERE HAD
BEEN MANY, MANY YEARS OF
ELECTROPHYSIOLOGY AND MOLECULAR
BRAIN BIOLOGY AN BRAIN IMAGING
AND IT WAS TIME TO DO THIS. IN
SCIENCE THERE ARE TIMES TO SOLVE
CERTAIN KINDS OF PROBLEMS.
THIS WAS THE TIME TO TRY TO
THINK OF GOING NOT ONE AT A TIME
OR NOT ONE VOXEL AT A TIME IN A
WHOLE BRAIN, BUT TO THINK ABOUT
HOW THOUSANDS OR EVEN MILLIONS
OF INTERCONNECTED NEURONS ARE
FUNCTIONING TOGETHER. SO WITH
THAT AS A STARTING POINT, WE HAD
TO BUILD A CONSENSUS ABOUT WHAT
THAT WOULD LOOK LIKE AND HOW WE
GO ABOUT DOING THAT. AGAIN I
WOULD SAY THE MOST IMPORTANT
PART OF THIS PROCESS THAT -- I
CAN ONLY TALK ONE PROCESS, I
CAN'T SAY THIS ALWAYS WORKS, I
CAN'T TELL YOU THIS IS WHAT THE
IMPORTANT THING WAS HERE BUT
WHAT FELT LIKE THE MOST
IMPORTANT PART OF THIS PROCESS
WAS BUILDING CONSENSUS, WAS
FIRST GETTING INTO CONTACT WITH
MANY OTHER NEUROSCIENTISTS TO
HAVE NUMBER OF WORKSHOPS ACROSS
THE U.S. WITH EXPERT
PARTICIPANTS IN THIS AREA, WE
INCLUDED PUBLIC COMMENTARY ON
THE WORK WE WERE DOING. AND WE
BEGAN BY PRESENTING FROM THIS
WORK INTERIM REPORT OF WHAT WE
THOUGHT RESEARCH PRIORITIES
WOULD BE. SO BRING IN THE
EXPERTS COME UP WITH AN IDEA AND
THEN YOU NEED CONVERSATIONS
PRESENTATIONS, AND FEEDBACK.
BRING IN MORE PEOPLE. GET MORE
BUY IN FOR MORE PEOPLE. SO FOR
EXAMPLE THIS THE SOCIETY OF
NEUROSCIENCE, YOU WILL HEAR FROM
LATER, ASKED US TO SPEAK TO
LEADERSHIP AND GENERAL
MEMBERSHIP ABOUT THE WORK THAT
WE WERE DOING SO WE CAN GET
THEIR INPUT. PERHAPS MOST
REWARDING PART OF THIS FOR ME
WAS INTERACTING WITH THE
PRESIDENTS AND MEMBERSHIP OF
MAJOR CLINICAL NEUROSCIENCE
PROFESSIONAL SOCIETIES, AMERICAN
ACADEMY OF NEUROLOGY,
PSYCHIATRIC ASSOCIATION.
THIS WAS SOMETHING THAT THEY HAD
BEENN'T BEEN ON THE ORIGINAL
HALF OF WHAT THE BRAIN
INITIATIVE WAS ABOUT IT IS THE
BASIC SCIENCE INITIATIVE, THEY
WERE BOUGHT INTO THE IDEA
CIRCUITS IS WHAT WE NEEDED TO
STUDY MAKE PROGRESS AGAINST
DISEASES, THEY INCLUDED AT THEIR
MEETINGS. HAD US WRITE ARTICLES
FOR JOURNALS AND HAD A SENSE
NEUROSCIENCE IS ONE DISCIPLINE
RANGING FROM MOST DETAILED
STUDIES OF ONE ION CHANNEL TO
STUDIES THAT INVOLVE HUMAN
BEGINS AND THEIR BIOLOGY AN
MEDICINE. WE TALK TO NATIONAL
ACADEMY OF SCIENCE MEMBERS,
AMERICAN ACADEMY FOR ASSOCIATION
OF SCIENCE AND AMERICAN SOCIETY
FOR CELL BIOLOGY. AND TO MANY
PUBLIC PRIVATE PARTNERS. THROUGH
ALL THIS WE WERE FINDER OF
THINKING, WE TOOK IN THE IDEAS
THAT CAME FROM OTHERS AND THAT
ENABLED US TO COME UP WITH A
SCIENTIFIC VISION AT THE END OF
THIS PROCESS AFTER ABOUT A YEAR.
I SHOULD SAY THAT IT WAS A LOT
OF WORK, PROBABLY HALF TIME FOR
ME DURING THAT YEAR BUT IT WAS
VERY REWARDING AND IT FELT LIKE
A WORTHWHILE THING TO DO. THAT
IS WHAT HAPPENS WHEN YOU START
TO WORK ON SOMETHING LARGER THAN
YOURSELF YOU THINK THIS COULD
HAVE MORE IMPACT THAN MY OWN LAB
RESEARCH. THAT IS HARD TO SAY
FROM YOUR EGO POINT OF VIEW YOU
WANT YOUR WORK TO BE THE MOST
IMPORTANT IN THE WORLD BUT AT
THE SAME TIME PART OF WHAT WE DO
IN SCIENCE IS THAT WE HELP TO
BUILD SCIENCE. AND THAT WE TAKE
RESPONSIBILITY FOR THE HEALTH OF
OUR FIELD. IT IS A PRIVILEGE TO
BE ASKED TO BE PART OF THAT
PROCESS AND THEREFORE SOMETHING
THAT MIGHT MAKE SCIENCE BETTER.
SO IDENTIFY SET OF RESEARCH
AREAS FOR EXAMPLE MOW WHAT THE
CENSUS OF CELLS WAS THE PARTS
LIST OF THE BRAIN, WE WANT TO
MAKE MAPS OF CONNECTIVITY, WE
IMPORTANT LARGE SCALE MONITORING
OF NEURAL ACTIVITY STARTING TO
BECOME POSSIBLE THEN BECAUSE OF
THE DEVELOPMENT OF GENETICALLY
ENCODED CALCIUM UNDERSTOOD KAY
TORRS.
DEMONSTRATING CAUSALITY GOING
FROM CAUSE TO EFFECT JUST
BECOMING POSSIBLE DUE TO SUCCESS
OF OPTO GENETICS METHODS FOR
MANIPULATING THE BRAIN. WE PUT A
BIG BODE IN FOR SOMETHING VERY
EARLY IN NEUROSCIENCE AT THE
TIME. WHICH WAS USING THEORY AND
DATA ANALYSIS AS WAY OF
EXAMINING THE LARGE DATA SETS
THAT RESULTED. AND THAT IS
SOMETHING THAT IS NOW BEING SEEN
ACROSS ALL BIOLOGY, ALL SCIENCE
AND MEDICINE, THE IMPORTANCE OF
LARGE DATA SETS AND ACCURATE
ANALYSIS OF THAT. WE WANT TO
ADVANCE HUMAN NEUROSCIENCE AND
ALL THOSE GOALS AN IN THE CLINIC
AND FINALLY WE WANT TO INTEGRATE
THAT INTO AN IDEA OF
NEUROSCIENCE.
THESE ARE THE RESEARCH AREAS
CARRIED OUT BY BRAIN INITIATIVE
NOW. BUT I ALSO WANT TO POINT
OUT ONE OF THE THINGS THAT
EMERGE FROM TALKING TO MANY
DIFFERENT PEOPLE IS THAT YOU
NEED TO HAVE PRINCIPLES ABOUT
HOW TO ACCOMPLISH THE GOALS, GO
FROM THE SCIENTIST VIEWPOINT
THIS IS THE SPECIFIC THING I
WANT TO DO, WHY AND HOW WHAT YOU
DO IT AND THAT WAS AN IMPORTANT
THING AROUND BUILDING CONSENSUS.
SOMETIMES IT FEELS LIKE STATING STATING
THE OBVIOUS LIKE YOU HAVE TO
STUDY HUMANS AND NOT HUMAN
ANIMALS YOU HAVE TO BE
INTERDISCIPLINARY. AND IT IS THE
THE CONVERSATION IS QUITE
INTERESTING SO FOR EXAMPLE FROM
MY PERSPECTIVE, I WAS REALLY
INTERESTED IN SHARING DATA AND
TOOLS. AND THAT REALLY REFLECTS
THE FIELD THAT I'M IN AND HOW I
SAW GENOMICS ADVANCE FROM SHARED
DATA AND INFRASTRUCTURE. BILL
KNEWSOME'S PERSPECTIVE IS A VERY
THOUGHT MUCH GREAT DEAL ABOUT
NEUROSCIENCE AND SOCIETY AND HE
REALLY WANTED TO MAKE SURE THAT
THE ETHICAL IMPLICATIONS OF
NEUROSCIENCE RESEARCH WERE THE
HEART OF THE BRAIN INITIATIVE
FROM THE BEGINNING. AND THAT
FINALLY OUR NIH COLLEAGUES SAID
YOU HAVE TO BE ACCOUNTABLE TO
US, TO THE TAX PAYERS AND
SCIENTIFIC COMMUNITY AND
BUILDING THAT INTO THE SYSTEM
SOMETHING YOU HAVE TO DO FROM
THE BEGINNING WOULDN'T HAVE
OCCURRED WHEN I STARTED THIS
WORK, WOULDN'T HAVE OCCURRED AS
GRADUATE STUDENT OR FOR THAT
MATTER AS FULL PROFESSOR. IF I
HADN'T HAD THIS INTERACTION WITH
THE BROADER COMMUNITY AROUND
SCIENCE. SO RELATIONSHIPS
BROADENING YOUR NETTED WORKS,
GETTING LOTS OF INPUT, IS KEY TO
THIS. I THINK THE BRAIN
INITIATIVE WAS A GOOD IDEA
BEFORE IT WAS GIVEN TO US TO
HELP PLAN AND I THINK MANY OTHER
PEOPLE AGREE IT IS A GOOD IDEA,
IN THIS YEAR'S BUDGET
APPROPRIATE RATION, $620 MILLION
TO THE BRAIN INITIATIVE, THERE'S
A SECOND PHASE OF PLANNING. FOR
ITS NEXT PERIOD GOING PAST FOR
THE REST OF THE DECADE. I THINK
THESE ARE THINGS THAT ARE --
THAT COULDN'T HAVE HAPPENED
WITHOUT MANY DIFFERENT PEOPLE
BEING INVOLVED. SO BEING THE
LEADER, IN THIS CONTEXT IS NOT
ABOUT MY IDEAS BEING THE
IMPORTANT ONES. GETTING THE BEST
IDEAS FROM AS MANY PEOPLE AS
POSSIBLE AND PUTTING THEM
TOGETHER. SO THAT IS A FIRST
ROUND OF LEADERSHIP AND
ADVOCACY. I SHOULD TELL YOU GUYS
I HAVE NEVER GIVEN THIS TALK
BEFORE. THIS IS A FIRST FOR ME,
I SPENT QUITE A BIT OF TIME AND
I WANT TO THANK YOU FOR GETTING
ME TO DO THIS, MAYBE PARTS OF IT
ROUGH AROUND THE EDGES, THAT ARE
INFORMAL. BUT ALEX AND SAHBA
INSPIRED ME TO THINK TO TAKE A
STEP BACK FROM THE WORK AND
THINK ABOUT HOW IT FITS INTO A
LARGER FRAMEWORK. SO THANK YOU
FOR THAT. SO THAT FINISH, THAT
FELT GOOD, BACK TO THE LAB, IT
WAS A GOOD TIME AND ABOUT A YEAR
LATER I GOT A PHONE CALL THAT
ASKED WHETHER IT WOULD BE
INTERESTED IN TALKING TO SOME
PEOPLE WHO ARE WANTING TO SET UP
A NEW SCIENCE PHILANTHROPY. THAT
WAS THESE PEOPLE HERE, MARK
ZUCKERBERG, FOUNDER AND CEO OF
FACEBOOK NOW META AND HIS WIFE
PRISCILLA CHAN, PEDIATRICIAN AND
EDUCATOR, THE TWO TOGETHER
DECIDED FIRST THEY SIGNED WHAT
IS CALLED THE GIVING PLEDGE,
GIVING AWAY HALF THEIR WEALTH IN
THEIR OWN LIFETIMES TO
PHILANTHROPIC CAUSES, AND SECOND
THEY DECIDED THAT THEY WANTED A
BIG PART OF THAT TO BE AN
INVESTMENT IN BIOMEDICAL
SCIENCE. SO WHAT PRISCILLA SAYS
IS SHE'S A PEDIATRICIAN, SHE
TAKES CARE OF CHILDREN, ONE OF
THE HARDEST THINGS IS TO SEE
CHILDREN WHOM THERE IS NO HOPE.
SHE SAID TO HER SCIENCE
REPRESENTS THAT HOPE. IT IS THE
IDEA OF BEING ABLE TO DO THINGS
GOING FORWARD. NOT NECESSARILY
THIS YEAR, NOT NECESSARILY NEXT
YEAR, OR PRISCILLA SAID WE WANT
TO HAVE IMPACT THAT WOULD BE
MEASURED BY THE END OF THE
CENTURY. I THINK THAT LONG TERM
VIEW IS REALLY IMPORTANT IN
SCIENCE, IT WAS SOMETHING THAT I
COULD AGREE WITH, WHEN WORKING
WITH THE PHILANTHROPY OR WITH
OTHERS WHO WANT TO WORK IN
SCIENCE LIKE THESE, IT IS
IMPORTANT TO FEEL A SENSE OF
ALIGNMENT AND A COMMON GOAL
TOWARD THE MISSION. FOR EXAMPLE,
MARK IS VERY MUCH A TECHNOLOGIST
SO WE ALIGN QUICKLY AROUND IDEA
THAT REALLY GOOD WAY TO ADVANCE
SCIENCE WAS TO DEVELOP NEW TOOLS
AND TECHNOLOGIES. I'M ALSO AS I
MENTIONED A SUPPORTER OF OPEN
SCIENCE AND COLLABORATIVE
SCIENCE, I FOUND IT VERY
IMPORTANT IN MY OWN CAREER AND I
JUST FEEL THIS SHOULD BE BROUGHT
AS BROADLY AS POSSIBLE. MARK AND
PRISCILLA WANT TO MAKE IT
POSSIBLE TO CURE PREVENT OR
MANAGE ALL DISEASE BY END OF THE
CENTURY, THAT CERTAINLY IS A
VERY AMBITIOUS STATEMENT. AND I
DON'T THINK IT IS OUTOF QUESTION
BUT WILL REQUIRE MORE SCIENCE
AND REQUIRE US TO DO BETTER
SCIENCE THAN WE CAN DO NOW AND I
JUST WANT TO SAY MANAGE LEADS A
LOT OF OPTIONS OPEN. SO WE
LAUNCHED THIS TOGETHER, I'M THE
FOUNDING HEAD OF SCIENCE AT THE
ZUCKERBURG INITIATIVE, SO TRYING
TO THINK HOW WE GO ABOUT DOING
THIS. WHAT DO WE THINK ABOUT
THAT COULD HAVE BROAD EFFECTS
ACROSS SCIENCE, WHAT ARE THE
SORTS OF TOOLS, WHAT ARE THE
MODELS OF RESEARCH THAT WOULD
REALLY MAKE A DIFFERENCE IN
TERMS OF ACCELERATING SCIENCE.
BECAUSE THAT'S WHAT WE VIEW AS
OUR FIRST GOAL. JUST MAKE
SCIENCE WORK FASTER. AND AGAIN
THIS IS NOT GOING TO SOUND LIKE
A SURPRISE AFTER BRAIN
INITIATIVE, I FELT WHAT WE
LEARNED FROM THE BRAIN
INITIATIVE IS THAT BY WORKING
WITH A LOT OF SMART PEOPLE YOU
GET A LOT OF SMART IDEAS. OUR
FIRST IDEA ABOUT WHAT WE WANTED
TO DO WAS TO JUST FINE OUT WHAT
IS SLOWING SCIENCE DOWN SO WE
CAN ACCELERATE AND WE DID THAT
BY ASKING SCIENTISTS.
WE ORGANIZED IMMEDIATELY A SET
OF WORKSHOPS AND INVITING PEOPLE
AT MA CAREER STAGES MANY TOPICS,
WE HAD HACK A ON THISES
MEETINGS, OTHER PEOPLE'S
MEETINGS AND WE JUST ASKED THEM
QUESTIONS, WE ASKED WHAT IS
SLOWING YOU DOWN, WHAT ARE THE
BOTTLENECKS IN YOUR WORK, WHAT
COULD HAPPEN THAT WOULD HAVE A
SYSTEMATIC EFFECT ACROSS YOUR
WORK AND MANY OTHER PEOPLE'S
WORK. WHAT CAN WE DO TO MAKE A
DIFFERENTIATED IMPACT. MARK AND
PRIA LITTLE IS A STARTED
PHILANTHROPY GIVING $3 BILLION
TO SCIENCE OVER TEN YEARS,
THAT'S TREMENDOUSLY GENEROUS.
AND IT IS 1 PERCENT OF THE NIH
BUDGET. LESS THAN 1% OF THE NIH
BUDGET SO YOU CAN'T JUST THROW A
PENNY AT EVERYTHING. YOU HAVE TO
PICK A FEW THINGS AND DECIDE IF
YOU WANT TO BE GOOD AT THEM.
FURTHERMORE, SO IN ADDITION TO
THIS KIND OF ONLINE TOPIC
SPECIFIC GUIDANCE WE HAD A
FANTASTIC SCIENCE ADVISORY
BOARD, HERE ARE FORMER AND
CURRENT MEMBERS FROM A VARIETY
OF DIFFERENT FIELDS AND A
VARIETY OF GUESTS AND LOCAL
ADVISORY BOARDS WHO HAVE BEEN
HELP US FIGURE OUT WHAT THE
RIGHT QUESTIONS ARE TO ASK AND
WHAT THE RIGHT PROBLEMS ARE TO
SOLVE. HERE IS WHAT WE ARE DOING
WHAT WE THINK OF AS FIVE YEARS
OF EXPERIMENTS. IN ACCELERATING
SCIENCE. SO WE ARE ABOUT FIVE
YEARS IN NOW AND WE HAVE SET OF
PROGRAMS ONE IN A RESEARCH
INSTITUTION, THE ZUCKERBURG
BIOHUB AND I WANT TO MENTION THE
WORK THAT THAT GROUP IS DOING IN
INFECTIOUS DISEASE, ONE OF
MICROSCOPY AND IMAGING ONE ON A
SPECIFIC BIOMEDICAL PROBLEM,
NEURODEGENERATION WHICH I CARE
VERY DEEPLY ABOUT. ONE IN OPEN
SCIENCE, AGAIN A CORE VALUE, ONE
IN SCIENCE AND SOCIETY AND THAT
RELATES MORE TO THESE IDEAS
ABOUT ADVOCACY AND COMMUNICATION
THAT Y'ALL TALKED ABOUT AND
THAT'S GOING TO BE THE END OF MY
TALK TODAY ON SOME INSIGHTS WE
HAVE GOTTEN FROM THINKING ABOUT
THAT. FINALLY SINGLE CELL
BIOLOGY. REALLY ADVANCING A
TECHNOLOGY FOR STUDYING THE
WHOLE HUMAN BODY.
BRIEF DISCUSSION.
SO THE ZUCKERBERG BIOHUB IS A
RESEARCH INSTITUTE IN THE SAN
FRANCISCO BAY AREA. IT IS
CO-FOUNDING PRESIDENTS WERE
STEVE QUAKE AND JOE DERISI FROM
STANFORD AND UCSF PERSPECTIVELY
AND MORE WORK IN CELL AND
BIOLOGY DISEASE. THE BIOHUB IS A
FREE STANDING INSTITUTE THAT
DOES COLLABORATIVE
INTERDISCIPLINARY RESEARCH, THAT
BUILDS OUT SCIENCE PLATFORMS AND
ENABLE PEOPLE TO DO SCIENCE AT
SCALE. SO WE KNOW THAT FOR
EXAMPLE FOR GENOMICS AND
SEQUENCING THE PLATFORMS ARE
USEFUL, BUT INCREASINGLY THOSE
HIGH THROUGH PUT APPROACH CAN BE
USED FOR MANY DIFFERENT
PURPOSES. THEIR COMMON IN
INDUSTRY AND BIOTECH AND PHARMA,
THEY HAVEN'T BEEN SO COMMON IN
ACADEMIA SO MAKING THEM
AVAILABLE TO ACADEMIC WAS ONE OF
THE ADVANCES HERE. ANOTHER
ADVANCE IS THAT IT IS REALLY
CONNECTED TO THE INSTITUTIONS.
ALWAYS STAY CONNECTED ALWAYS
COLLABORATE. IN THIS CASE
PHYSICIAN SCIENTISTS AND
ENGINEERS FROM THE THREE SCHOOLS
HAVE BEEN PARTNERS WITH BIOHUB
AND FUNDED BY THE BIOHUB. SO
THIS IS GETTING GOING, IT HAS A
GREAT SPIRIT WAS FUN TO BE
THERE. AND IN 2020 THE COVID-19
PANDEMIC HIT.
SO WHAT DO YOU DO?
THERE IS AN IMMEDIATE PERIOD OF
REALIZING THAT THE EXISTING
SYSTEMS AS POWERFUL AS THEY ARE
FOR TESTING FOR COMMUNITY WORK,
PUBLIC HEALTH WERE JUST NOT FAST
AND FLEXIBLE ENOUGH TO RESPOND
TO EMERGENCY IN WHICH WE FOUND
OURSELVES. BUT THE BIOHUB HAD
SOME EXPERIENCE IN INFECTIOUS
DISEASE, THEY HAD A LOT OF
EXPERIENCE IN HIGH THROUGH PUT
PLATFORMS AND METHODS LIKE PCR
AND SEQUENCING. THEY HAD
POTENTIAL TO STEP INTO A TESTING
GAP THAT EXISTED. SO IN MARCH OF
2020 THE UCSF HOSPITAL SYSTEM
CAPABLE OF DOING 16 COVID TEST
AS DAY, ONE SIX FOR A CITY AND
GREATER METROPOLITAN AREA OF
SEVERAL MILLION. THIS IS AN
ISSUE. THE BIOHUB SO ALSO
QUICKLY IT BECAME CLEAR ALSO
GOING TO BE A GROUP OF PEOPLE IN
THE SAN FRANCISCO BAY AREA WHERE
DIFFERENTIALLY AFFECTED BY THIS
PANDEMIC. AND THOSE WERE THE
LATINX COMMUNITY, THE COMMUTE
EXTENSIVELY AROUND THE BAY AREA
PARTICULARLY TRANSPORTATION AND
VERY EARLY ON BECAME CLEAR HE
HAS HIGHER INFECTION RATE THAN
OTHER POPULATIONS IN THE BAY
AREA. HOW WE MAKE IMPACT AT A
TIME LIKE THIS?
THE IMPACT WAS 100% ABOUT
PARTNERSHIPS THE IMPACT WAS 100%
ABOUT RELATIONSHIPS.
THE BIOHUB KNOWS HOW TO DO P,
C,R REACTION, THAT IS WELL AND
GOOD. WHO IS FCR REACTION, WHO
IS IN CHARGE, WHO IS CERTIFY
THAT IS OKAY?
THE BIOHUB IS LINKED TO UCSF,
MAJOR MEDICAL CENTER UCSF KNOWS
THE CRITERIA FOR TESTING LAB, SO
THEY WORKED WITH BIOHUB TO BRING
THEIR LABS UP TO SNUFF, THE
CLINICAL PRACTICE LEVEL IN TEN
DAYS.
SO THE BIOHUB CAN START DOING
THOUSANDS OF TEST AS DAY. WHO
ARE YOU GOING TO REACH OUT TO,
HOW ARE YOU GOING TO -- WHY ARE
PEOPLE GOING TO TRUST YOU IN
THIS WORK?
AND AT UCSF THERE IS A REALLY
WONDERFUL PHYSICIAN SCIENTIST
NAMED DIANE WHO WORKS ON AIDS
HIV, BECAUSE THAT COMMUNITY IS
MOST AFFECTED HAS A LONG
STANDING COMMUNITY RELATIONSHIP
WITH THE LATINX COMMUNITY IN THE
SAN FRANCISCO BASAN FRANCISCO BAY AREA. SH E
PARTNERS CLOSELY WITH THE LATINO
TASK FORCE GETTING HELP TO
LATINX MEMBERS WHO ARE AFFECTED
BY AIDS HIV AND LIVING WITH HIV.
SO SHE WAS ABLE TO FORM A BRIDGE
WITH THE LATINO TASK FORCE TO
COMMUNICATE WITH PEOPLE WHO
TRUSTED HER WHO HAD
RELATIONSHIPS WITH HER AND SAY
HEY YOUR COMMUNITY WE NEED TO
REACH OUT TO THEM, MAKE SURE
THAT THEY CAN GET TESTED, WE
NEED TO MAKE SURE THEY HAVE
RESOURCES SO THEY TEST POSITIVE
THEY CAN PULL AWAY FROM EXTEND
FAMILIES UNTIL THEY GET --
EXTENDED FAMILIES UNTIL THEY GET
BETTER. IT WAS THIS COMBINATION
OF PEOPLE. I'LL MENTION THIS IN
A MINUTE YOU NEED SOFTWARE AND
DATA HANDLING AND SAFE
INFORMATION INFRASTRUCTURE TO DO
THAT AND I WILL TELL YOU ABOUT
CCIs WORK ON THIS IN A MINUTE
BUT THAT WAS PART OF THIS AS
WELL. SO GETTING THIS GOING,
WHICH ULTIMATELY WAS TESTING
STATION WAS SET UP IN ONE OF THE
MAJOR RAPID TRANSIT STATIONS IN
THE SAN FRANCISCO BAY AREA.
WHERE HUNDREDS OF THOUSANDS OF
PEOPLE CAME THROUGH EVERY DAY,
PARTICULARLY FROM THAT
COMMUNITY. AND IT JUST REQUIRES
THIS WHOLE COMMUNITY FACING
ORGANIZATION, THE TRUSTED
MEDICAL RESEARCHER, THE MEDICAL
SCHOOL, THE BIOHUB, AND THE
TECHNICAL INFRASTRUCTURE TO MAKE
IT COME TOGETHER.
SO IF YOU WANT TO MOVE FAST YOU
NEED RELATIONSHIPS AND IF THERE
IS ONE THING I FEEL I LEARNED,
IT IS BUILD YOUR RELATIONSHIPS
KEEP BUILDING YOUR RELATIONSHIPS
THROUGHOUT YOUR CAREER. AND THAT
WILL ENABLE MORE WORK TO HAPPEN.
FASTER. SO THIS ENDED UP BEING A
REALLY EXCITING DEMONSTRATION OF
SOMETHING THAT WOE THOUGHT THAT
YOU CAN ACCELERATE SCIENCE BY
CREATING NEW KINDS OF SUPPORT
FOR RESEARCH THAT THE FLEXIBLE
AND PROFESSIONAL PLATFORMS FOR
SCIENCE AT SCALE WERE -- IT WAS
POSSIBLE TO RAPIDLY DEPLOY TO A
COMMUNITY. IT WAS BASED ON
RELATIONSHIPS AND HELPED THE
BIOHUB BUILD NEW RELATIONSHIPS
FOR EXAMPLE WITH STATE OF
CALIFORNIA THAT WAS EXTENDED OUT
PUBLIC HEALTH WORK THROUGHOUT
THE STATE OR SUBSEQUENT
TRACKING. ALL OF THAT SERVED AS
PROOF OF PRINCIPLE, SOMETHING WE
THOUGHT WE COULD DO WITHIN THIS
PHILANTHROPY, WORKING WITH
PHILANTHROPISTS WHAT THEY LIKE
IS BUSINESS PEOPLE AND LIKE TO
SEE SUCCESS, THIS WAS VERY
EXCITING. TO THE FOUNDERS AT CCI
IN FACT LAST FALL THEY ANNOUNCED
THEY ARE GOING TO DOUBLE INITIAL
$3 BILLION INVESTMENT TO SCIENCE
TO A $6 BILLION INVESTMENT OVER
TEN YEARS. THAT SUCCESS MADE
THEM FEEL ON THE RIGHT TRACK.
ONE PART IS THEY ANNOUNCED
FORMING A BIOHUB NETWORK THEY
WANT MAYBE THREE OR FOUR MORE
BIOHUBS ACROSS THE US. EACH
SERVING AS A NUCLEATING SITE FOR
SCIENCE WITHIN A GEOGRAPHICAL
AREA TO MOVE SCIENCE FORWARD. SO
THE RIGHT KIND OF GOALS THE
ALIGNMENT OF GOALS,
DEMONSTRATION OF SUCCESS, IN
THIS CASE IS REALLY -- HAS BEEN
TERRIFIC. THIS IS ONE THING I
WANT TO POINT OUT NOW THAT WE
THINK THAT THIS PHILANTHROPY CAN
HAVE A DIFFERENTIATED IMPACT AND
IT'S TAKE A LITTLE WHILE TO BE
CLEAR WHAT THAT IS. SO THE FIRST
IS WE START AS A SCIENCE FUNDING
ORGANIZATION, I WILL TELL YOU
MORE ABOUT THAT. WE FUND
SCIENTISTS WORLDWIDE.
WE HAVE DEVELOPED A SPECIAL
INTEREST FROM THE OUTSET AND
COMPUTATIONAL SCIENTIST PEOPLE
IN MACHINE LEARNING AND
ARTIFICIAL INTELLIGENCE AND
APPLYING THAT TO BIOMEDICAL
PROBLEMS. WE HAVE A STRONG
INTEREST IN EARLY CAREER WITH
RESEARCHERS THAT INTERACT WITH
PEOPLE AT THAT STAGE OF THEIR
CAREER, WHICH POINT YOU HAVE
MAXIMUM IMPACT. WE BELIEVE IN
TECHNOLOGISTS AND TECHNICAL
EXPERTS AND OFTEN THESE ARE
PEOPLE WHO ARE NOT FUNDED IN
MORE TRADITIONAL PROJECT BASED
GRANTS. BUT WE DO ANOTHER THING
AS WELLMENT WE HAVE WITHIN THE
CCI PROGRAM A HUNDRED SCIENCE
TECHNOLOGY STAFF IN HOUSE
PROFESSIONAL OPEN SOURCE
SOFTWARE DEVELOPERS, SOFTWARE
ENGINEERS, PRODUCT MANAGER, USER
EXPERIENCE RESEARCHERS, THEY ARE
WHICH WOULDING SOFTWARE FOR
SCIENTISTS USING THE KINDS OF
CRITERIA PEOPLE USE IN THE
COMMERCIAL SECTOR FOR THINGS
THAT ARE NOT COMMERCIALLY VIABLE
BUT WE BELIEVE IMPORTANT AND
IMPACTFUL. THE THREE MAJOR
PROJECTS ARE SINGLE CELL BIOLOGY
IN GENE AND INFECTIOUS DISEASE.
THAT SOFTWARE WAS A HEART OF
SOME OF THE THINGS THE BIOHUB
WAS DOING IN PUBLIC HEALTH IN
THE STATE OF CALIFORNIA. WE
COLLABORATE WE ARE WILLING TO
COLLABORATE WITH EVERYONE YOU
CAN SEE IN THAT PROJECT WE ARE
INTERACTING WITH DIFFERENT
SCHOOLS WITH THE COMMUNITIES,
WITH THE STATE, WITH THE CITY,
DEPARTMENT OF PUBLIC HEALTH AND
WE ENGAGE, WE BELIEVE THAT
SCIENCE IS NOT SOMETHING THAT
EXISTS ALL ON ITS OWN BUT HAS TO
BE TAKE INTO ACCOUNT THE
COMMUNITY IN SCIENCE. WE TAKE
THOSE KINDS OF EACH PROJECT WE
START WE TAKE THOSE IDEAS TO
THINK ABOUT FURTHER. SO HERE IS
ANOTHER BIG TOOL DEVELOPMENT
GOING ON PROJECT GOING ON CCI,
IT IS THE SINGLE CELL BIOLOGY
PROGRAM. WE THINK OF THIS AS THE
PERIODIC TABLE OF CELLS.
WE WANT TO KNOW WHAT ALL THE
DIFFERENT CELL TYPES ARE IN THE
HUMAN BODY. WE WANT TO
UNDERSTAND THEIR FUNCTION AND
HELPING DISEASE BECAUSE THEY ARE
FUNDAMENTAL UNIT OF LIFE. THIS
IS A TECHNOLOGY PROGRAM AND DATA
PROGRAM AND A PLATFORM PROGRAM
MAKING A RESOURCE TO ACCELERATE
SCIENCE, TAKING THIS CROSS
CUTTING IDEA BECAUSE EVERY
DISEASE HAS A CELLULAR BASIS SO
IF YOU KNOW WHAT THE DIFFERENT
CELL TYPES ARE, YOU CAN REACH
THAT CELL -- REACH AN
UNDERSTANDING MORE QUICKLY THAN
IF YOU HAVE TO STUDY THEM
INDIVIDUALLY. SO AGAIN, WE ARE
ACCELERATING METHODS
TECHNOLOGIES AND APPLICATIONS,
WE ARE SUPPORTING THE
INTERNATIONAL GRASSROOTS
SCIENTIFIC COMMUNITY THAT'S
WORKING ON THIS WHICH IS CALLED
THE HUMAN CELL ATLAS, WE SUPPORT
THEM THROUGH GRANT FUNDING, AND
WE ARE WRITING SOFTWARE AND DATA
PLATFORMS TO ALLOW PEOPLE TO
SHARE IN THIS DATA, OUR DATA
PLATFORM INCLUDES 26 MILLION
CELLS, HUMAN CELLS, BUT THE
IMPORTANT THING IS THAT THAT'S
NOT JUST WORK CCI FUNDED, IT IS
A GOOD PLATFORM AND SOME OF THE
NIH BRAIN INITIATIVE RESEARCHERS
HAVE PUT THEIR DATA THERE. THE
HUMAN LUNG CELL ATLAS ANNOUNCED
A BIG RELEASE LAST WEEK AND HAIR
DATA IS ALSO ON CELL BY GENE SO
THE IDEA IS THIS COULD SERVE AS
A COMMON PLACE LIKE GEN BANK TO
LOOK THEIR CELL OR GENE UP AND
FIGURE OUT WHAT CELL IT IS IN
AND BE A RESOURCE FOR ANY
SCIENTIST TO LEARN MORE. AS WE
STARTED TO DO THIS WORK, AS
COVID HIT WE REALIZED WE HAVE
BEEN MAKING SOME MISTAKES.
SO WE WERE JUST SORT OF TAKING
WHOEVER CAME IN WORKING ON
WHATEVER CELL TYPES PEOPLE
THOUGHT WERE INTERESTING, WE
WERE NOT WORKING ON PEOPLE
THINKING ABOUT DIFFERENT
ANCESTRIES PEOPLE HAVE, THIS WAS
A STATEMENT MADE IN HUMAN GENOME
PROJECT AND WE ARE REPEATK IT.
WE WERE NOT THINKING ABOUT THE
FACT THAT DISEASES MANIFEST
DIFFERENTLY AT DIFFERENT STAGES
OF LIFE SO WE WEREN'T LOOKING AT
CHILDREN EITHER. SO THAT LED US
TO TAKE A STEP BACK AND THINK
MORE BROADLY ABOUT THE IMPACT OF
SCIENCE AND HOW TO MAKE ANY
SCIENTIFIC PROGRAM BETTER.
AGAIN THIS IS REACHING OUT TO
COMMUNITIES THINKING ABOUT IT,
AND AGAIN BEING SHAKEN AS MANY
WERE TWO YEARS AGO BY THE KINDS
OF REAWAKENING OF OUR
UNDERSTANDING OF HOW MUCH
INEQUITY THERE IS IN THIS
COUNTRY AND WORLDWIDE. HAS MADE
US THINK ABOUT HOW TO ADVANCE
DIVERSITY EQUITY AND INCLUSION,
NOT JUST IN A GENERAL WAY BUT
SPECIFICALLY IN SCIENCE. SO TO
ASK QUESTIONS LIKE WHO DOES THE
SCIENCE, WHO ARE THE SCIENTISTS
THEY SPORE, WHAT SCIENCE IS
DONE, THAT CEASE WHAT THE SINGLE
CELL BIOLOGY PROGRAM WAS TELLING
US, YOU WEREN'T DOING RIGHT
SCIENCE IF 80% THE PEOPLE THE
SAMPLES YOU HAVE ARE PEOPLE OF
EUROPEAN ORIGINS.
WHO IS AT THE TABLE, WHO HAS A
VOICE IN WHAT COMES OUT OF THIS?
AND HOW IT IS ORGANIZED, AND
WHAT YOU ARE GOING TO DO. AND
WHO HAS ACCESS TO WHAT RESULTS,
IS THIS JUST FOR ACADEMIC. IT IS
BEHIND SOME MANAGED ACCESS, DOES
IT BELONG TO PERSON WHO
GENERATED IT OR DOES IT BELONG
TO PEOPLE MORE GENERALLY. THAT
HAS BEEN WORKING THROUGH THAT
WHILE WE THOUGHT ABOUT EXPANDING
THE SINGLE CELL PROGRAM BOTH
PEDIATRICS AND DIVERSE
ANCESTRIES HAS BEEN REWARDING.
SO THE FIRST THING TO SAY IS
THAT AFTER WE STARTED INCLUDING
PEDIATRICS AND DIFFERENT
ANCESTRIES IN THE SINGLE CELL
BIOLOGY PROGRAM, WE STARTED
ENGAGING A MUCH BROADER SET OF
SCIENTISTS AROUND THE WORLD. SO
WE NOW HAVE SCIENTISTS ON ALL
THE INHABITED CONTINENTS, WHO
ARE PARTICIPATING DIRECTLY IN
THE HUMAN CELL ATLAS WORK IN
SINGLE CELL BIOLOGY IN
UNDERSTANDING THINGS LIKE IMMUNE
CELLS AND SUSCEPTIBILITY TO
INFECTION AND DIFFERENT
POPULATIONS OR TO DIFFERENT AGE
GROUPS. WE NEEDED TO THINK ABOUT
THIS CAREFULLY, THAT HAS TO DO
-- THIS IS MORE WHAT SCIENCE HAS
DONE, WE THOUGHT ABOUT WHO DOES
THE SCIENCE, SO IN ALL THESE
PROJECTS THERE ARE PEOPLE IN
COUNTRY DIRECT PARTICIPANTS,
THIS IS NOT HEAP COMETTER
SCIENCE WHERE SOMEBODY SENDS
SAMPLES TO A LAB. IF YOU ARE
DOING STUDIES IN PEDIATRICS OR
DOING STUDIES IN PEOPLE WITH
DIFFERENT ANCESTRIES, IT IS
IMPORTANT TO RECOGNIZE THAT
THESE -- IN SOME CASES YOU ARE
NOT GOING TO HAVE THE RIGHT
AIONALS ABOUT WHAT THEY NEED --
ASSUMPTIONS WHAT THEY NEED AND
ASSURANCES THEY NEED FOR THE
SCIENCE TO SERVE THEM. FOR ALL
THESE WE HAVE INVOLVED COMMUNITY
FACING RESEARCHERS IN EACH MAJOR
GRANT PROGRAM, SOMEONE DIRECTLY
INVOLVED IN COMMUNITIES AND
THERE IS CONSCIOUS EFFORT TO
GIVE BACK TO COMMUNITIES.
SOMETIMES IT INVOLVES THINGS
LIKE BUILDING SCIENTIFIC
INFRASTRUCTURE, SOMETIMES
INVOLVE MORE THINGS LIKE
EDUCATION. BUT IT IS ALWAYS
KEEPING IN MIND WHAT PEOPLE WHO
ARE PARTICIPATING IN RESEARCH
ARE PARTICIPANTS, NOT SUBJECTS.
AND THEY NEED TO BE REWARDED AS
IN THEIR ROLES AS PARTICIPANTS.
WE -- WHAT WE VIEW THIS AS
TAKING AN EQUITY LENS, WE ARE
NOT TACKLING DIVERSITY EQUITY
AND INCLUSION PER SE AS OUR
PRIMARY GOAL, SCIENCE IS OUR
PRIMARY GOAL BUT EVERY FORM OF
SCIENCE YOU CAN TAKE EQUITY LENS
AND MAKE SURE ITS MEETING
PRINCIPLES AND LOOKING BROADLY.
FOR EXAMPLE WE HAVE PROGRAM
SUPPORTING STUDENT DIVERSITY AND
SCIENCE AND TECHNOLOGY AT
SEVERAL UNDERGRADUATE
INSTITUTIONS, WE HAVE AN OPEN
RFA ON FACULTY DIVERSITY AND
LEADERSHIP THAT DIVERSE FACULTY
SHOW IN PROMOTING SCIENTIFIC
WORK FORCE DEVELOPMENT AND
OPENNESS. WE VIEW EQUITY AS NOT
JUST A U.S. THING AS YOU CAN SEE
IN OUR LAST SLIDE BUT AS A
GLOBAL THING. SO WE HAVE BEEN
DOING META GENOMICS IN
INFECTIOUS DISEASE MANY THE
GLOBAL CELL, AGAIN PARTNERSHIP
WITH THE BILL AND MELINDA GATES
FOUNDATION, AND THE CHAN
ZUCKERBURG BIOHUB, WE ARE
SUPPORTING SCIENTISTS IN 15
COUNTRIES WITH FUNDING TRAINING
AND SOFTWARE SO THEY CAN FIND A
KNOWN INFECTIOUS AGENT SO THEY
CAN TRACK DISEASES THAT ARE
IMPORTANT IN THEIR OWN
COMMUNITY. ALL RIGHT. BACK TO
TECHNOLOGY WE ARE VERY
INTERESTED IN IMAGING, THIS IS
ANOTHER IDEA FOR US AS
TECHNOLOGY, IT CAN HAVE BROAD
SUCCESS AND IMPACT ACROSS
VARIETY OF AREAS OF HEALTH AND
DISEASE.. WE ARE SUPPORTING WORK
AT THE FRONTIERS OF IMAGING
WHETHER THAT IS IMAGING DEEP
WITHIN TISSUES, TRYING TO
IDENTIFY SINGLE CELLS AND
MOLECULAR PROCESSES DEEP WITHIN
THE BODY OR TRYING TO IDENTIFY
ALL THE DIFFERENT MOLECULES
WITHIN A SINGLE CELL BY
COMBINING LIGHT AND ELECTRON
SPECTROSCOPY IN INNOVATIVE WAYS.
IMAGING SCIENTISTS WORLDWIDE,
EVERY INHABITED CONTINENT. WE
ARE WRITING SOFTWARE, WRITING
NEW SOFTWARE TO ANALYZE IMAGE
DATA QUANTITATIVE, WE ACCURATELY
REPRODUCIBLE FASHION CAN BE
SHARED.
HERE IS AN AREA WHERE THE
SUCCESS AND THE CREATIVITY OF
THE FIRST GRANTEES HAS MADE SUCH
AN IMPRESSION ON MARK AND
PRISCILLA THEY DOUBLED IN THIS
AREA BY STARTING RESEARCH
INSTITUTE SPECIFICALLY TO
SUPPORT ADVANCE BIOMEDICAL
IMAGING TO ALLOW THESE
TECHNOLOGIES TO REACH THEIR FULL
POTENTIAL AND VERY IMPORTANTLY,
TO DISSEMINATE TO THE BROADEST
POSSIBLE GROUP OF SIG SCIENTISTS. SO
ANYTHING WE DEVELOP WE MAKE
AVAILABLE WORLDWIDE AS QUICKLY
AS POSSIBLE. WE HAVE A PROGRAM
IN NEURODEGENERATION WHICH WE
ARE PART OF OUR GOAL IS TO BRING
MORE PEOPLE INTO AN INCREDIBLY
IMPORTANT DISEASE AREA, AND WE
ARE FIGHTING AGAINST THE FACT IT
IS HARD TO CHANGE FIELDS IN THE
MODERN SCIENTIFIC SYSTEM SO WE
HAVE MADE IT EASIER FOR PEOPLE
TO MOVE IN A COLLABORATIVE
SETTING, TO A NEW SCIENTIFIC
RESEARCH FIELD AND DO NEW WORK.
WE HAVE A LOT OF INTEREST IN
OPEN SCIENCE AND ACCELERATING
WITH SHARING ROBUSTNESS AND
REPRODUCIBILITY OF SCIENCE. AND
AGAIN THIS IS A PLACE WHERE WE
THINK ABOUT LIKE WHO HAS ACCESS,
WHO HAS ACCESS TO RESULTS WHILE
IN ORDER TO SEE THAT YOU NEED TO
HAVE PLATFORMS ENABLE SHARING OF
RESULTS, NEED OPEN DATA SETS.
AND WE ALSO HAVE SOFTWARE
DEVELOPMENT THAT IS AN IMPORTANT
COMPONENT OF CREATING THIS
ROBUST SHARED INFRASTRUCTURE.
SO THE LAST THING I WANT TO TALK
ABOUT CLOSING OF MY TALK IS THE
WORK WE ARE DOING IN SCIENCE AND
SOCIETY. SO THE FLAGSHIP OF THIS
PROGRAM IS A PROGRAM CALLED RARE
IS ONE. WE ARE INCLUDING RARE
DISEASE PATIENT GROUPS AND
ADVOCATES AS FULL PARTNERS IN
RESEARCH. BASICALLY EMPOWERING
THEM TO MAKE DECISIONS WHAT
RESEARCH GOES ON IN THEIR OWN
DISEASES.
THIS HAS BEEN A INSPIRING GROUP
OF PEOPLE, AND WE STARTED
THINKING WELL WE KNOW ONE OR TWO
EXAMPLES WHERE PATIENT ADVOCATES
MADE IMPACT IN SCIENCE, THE
HEREDITARY DISEASE FOUNDATION
FOR EXAMPLE. THE CASTLEMAN
DISEASE FOUNDATION BUT WE HAVE
BEEN AMAZED HOW MANY PATIENT
GROUPS THERE ARE WITH POTENTIAL
TO REALLY MOVE THE NEEDLE
FORWARD.
RARE DISEASE MAY INDIVIDUALLY BE
RARE BUT THEY ARE AT LEAST 7,000
SO COLLECTIVELY THEY ARE QUITE
COMMON. THIS IS AN AREA WE CAN
PUSH. SO WE HAVE RFAs OPEN
CURRENTLY, RAREST DISEASE GROUPS
WORKING WITH OTHER PROGRAMS. WE
ARE EXCITED ABOUT THIS, EXCITED
ABOUT THIS BECAUSE PATIENTS AND
THEIR FAMILIES AND ADVOCATES ARE
THE NATURAL ALLIES OF SCIENCE.
THESE ARE THE PEOPLE WHO WANT TO
SEE SCIENCE MOVE FORWARD. WE
VIEW THIS AS -- THIS IS NOT
ADVOCACY DIRECTLY BUT WE ARE
EMPOWERING THEIR ADVOCACY ON
BEHALF OF SCIENCE. ONE PLACE WE
ARE TRYING TO LEARN MORE IS IN A
PROGRAM CALLED THE MOVEMENT FOR
SCIENCE, BEING RUN BY TONYA
SHELLEY, THE HEAD OF SCIENCE
GROUP. THIS IS ABOUT THINKING
PUBLIC TRUST IN SCIENCE. YOU
PROBABLY HEARD ABOUT THIS,
THERE'S SOME REALLY EXCELLENT
GROUPS THAT DO THIS IN A
PRINCIPLED RESEARCH FRAMEWORK
LIKE THE AAAS, THE WELLCOME
TRUST THE CHARITABLE TRUST
SCIENCE COUNTS. BUT WE HAVE A
UNUSUAL SETUP IN OUR
PHILANTHROPY WHERE BUILT BY
BUSINESS PEOPLE AND MANY PEOPLE
HAVE BUSINESS BACKGROUND, THEY
THINK ABOUT PROBLEMS FROM A
DIFFERENCE PERSPECTIVE. WHAT
THEY THINK ABOUT IT FROM IS THE
PERSPECTIVE THAT IS USED IN
GOVERNMENT, IT IS USED IN
ELECTIONS IT IS USED IN
MARKETING. USED IN WHAT IS
AUDIENCE, WHAT ARE THE SEGMENTS
OF AUDIENCE WHICH PARTS CAN YOU
REACH AND BY WHAT MECHANISMS.
THIS IS UNUSUAL FOR SCIENCE, WE
DON'T KNOW CASE RATES BEFORE BUT
BASICALLY RESEARCH GOAL WAS
CONDUCT CAMPAIGN STYLE RESEARCH,
POLITICAL CAMPAIGN, A MARKETING
CAMPAIGN. JUST TRY TO UNDERSTAND
HOW THE U.S. POPULATION RELATES
TO SCIENCE. AND THE IDEA WAS TO
DEVELOP SOME SORT OF A
SEGMENTATION OF THE U.S.
POPULATION THAT UNDERSTANDS
DIFFERENT AUDIENCES, AND HOW
THEY RELATE TO THE SCIENTIFIC
(INAUDIBLE). WHAT DID WE DO?
WE DO A MIXED METHODS RESEARCH
PROGRAM, WE INTERACT WITH
SEVERAL THOUSAND PEOPLE ACROSS
THE US. AND ASK HOW THEY RELATE
TO SCIENCE AND WHAT THEIR
INDIVIDUAL EXPERIENCES WITH
SCIENCE IS. SO IT INCLUDES
ONLINE FORUMS, IT INCLUDES THEM
IN ANALYSIS OF THE ONLINE FORUMS
TO UNDERSTAND WHAT PEOPLE -- HOW
PEOPLE CLASSIFY DIFFERENT IDEAS
AND RESPONSES. THEN IT WAS
FOLLOWED BY IN DEPTH INTERVIEWS
WITH A SET OF DIFFERENT PEOPLE,
AND INCLUDED FACILITATED
DISCUSSIONS IN A VARIETY OF
CITIES IN THE U.S. CHARLOTTE
PHOENIX COUPLE OF OTHER PLACES,
SOMETIMES JUST WITH THESE FOLKS
IN THE AUDIENCE AND SOMETIMES
WITH DIFFERENCE SCIENTISTS THERE
IN ADDITION. SO WHAT DID WE
LEARN FROM THIS?
Y'ALL MAYBE USED TO SEEING THIS
IN A SCIENTIFIC SETTING. CLUSTER
ANALYSIS WITH NON-MATRIX
FACTORIZATION, WE ASK PEOPLE
AGREE OR DISAGREE WITH CERTAIN
STATEMENTS. IF YOU GIVE PEOPLE
BUNCH OF STATEMENTS AN BUNCH OF
PEOPLE PEOPLE TEND TO ANSWER THE
SAME STATEMENTS IN THE SAME WAY,
THEY FALL OUT IN CLUSTERS
SUGGESTING CONSENSUS WAYS THAT
PEOPLE INTERACT WITH DIFFERENT
KINDS OF STATEMENTS ABOUT THE
SCIENTIFIC ENTERPRISE.
AND YOU CAN PUT A NAME AND TELL
A STORY WHO THEY ARE AND THIS IS
WHAT WE LEARNED ABOUT THE U.S.
POPULATION.
SO FIRST LET'S START FROM THE
FAR RIGHT, THESE ARE PEOPLE WE
ALL WISH EVERYONE WAS IF WE ARE
SCIENTISTS WE WISH EVERYONE
BELIEVE SCIENCE CAN UNCOVER THE
TRUTH AND MAKE A DIFFERENCE. IN
2019 THAT WAS NINE PERCENT
AMERICANS BELIEVED THAT. BUT
THERE WAS ANOTHER GROUP OF
PEOPLE CLOSE TO THAT, THAT WE
ALSO FEEL LIKE ARE NATURAL
ALLIES IN SCIENCE, PEOPLE WHO
ARE INTERESTED IN FACTS AND
UNDERSTANDING WHAT THE DECISIONS
ARE RIGHT FOR AND THAT WAS 15%
OF THE POPULATION.
SO AGAIN, THAT'S SOMETHING WE
REALLY KNOW WHO THOSE ARE.
THEN THERE IS A GROUP OF PEOPLE
WHO ARE LIKE I TRUST THE
EXPERTS, I DON'T WANT TO FIGURE
THIS OUT FOR MYSELF, I'M GOING
TO DO WHAT MY DOCTOR TELLS ME,
TRUST SCIENCE, PEOPLE PREFER TO
BELIEVE SOMEBODY ELSE WILL TELL
THEM THAT'S 20% OF THE
POPULATION.
NOW WE ARE LESS THAN HALF OF THE
POPULATION. IT IS BASICALLY
GOING TO BE ALIGNED AROUND THE
SCIENTIFIC DOMAIN.
GOING IN FROM THE LEFT, THERE
ARE PEOPLE WHO ARE EITHER SORT
OF LIKE ALREADY DRIVEN BY
PERSONAL EXPERIENCE AND
EXPERIENCE OF THEIR FRIENDS,
THEY TURN TO THEIR EXPERIENCES
WHEN FACED WITH DIFFICULT
DECISIONS THEY DON'T NECESSARILY
WANT EXPERT ADVICE.
IN ADDITION THERE IS A GROUP OF
PEOPLE WHO JUST LIKE -- THEY
JUST DON'T FEEL LINE SCIENCE IS
RELEVANT TO THEM, THE WORLD IS
COMPLICATED LIKE FIGURE OUT WHAT
YOU WANT TO DO AND DO THAT SO
THEY ARE DETACHED IN INTERESTING
-- NOT INTERESTED IN SCIENCE.
THIS GROUP HERE I HIGHLIGHT
HERE, WHAT WE CALL TEAM SKEPTIC,
IT IS 12% OF THE POPULATION AND
THEY THINK THEY UNDERSTAND
SCIENCE BUT THEY ARE VERY
CRITICAL OF THE MOTIVATIONS OF
SCIENTISTS, THE CRITICAL OF THE
MOTIVATION BLIND SCIENTIFIC
INSTITUTIONS, THEY ARE MIST
TRUSTFUL OF COMPANIES
MISTRUSTFUL OF GOVERNMENT AND
THAT SHOWS UP IN WHAT THEY DO.
SO IF YOU REFLECT ON YOUR OWN
FAMILY ACQUAINTANCES YOU
PROBABLY KNOW SOME PEOPLE IN
EACH OF THESE CATEGORIES. I
CERTAINLY DO. HERE IS SOMETHING
INTERESTING. PUT PEOPLE
TOGETHER, YOU PUT A SCIENTIST TO
THE RIM, SCIENTIST WANTS TO
COMMUNICATE WITH THIS GROUP OF
PEOPLE, MIXED GROUP, WHAT
HAPPENS IS SCIENTIST AND TEAM
SKEPTIC GO HEAD TO HEAD FOR THE
ENTIRE DISCUSSION WITH EVERYONE
ELSE IN THE ROOM BEING IGNORED.
IT IS AN OBVIOUS DYNAMIC WE SAW
IN OUR DIFFERENT DISCUSSION
GROUPS. I HAVE NEWS FOR YOU
FOLKS, YOU ARE NEVER GOING TO
CONVINCE THOSE PEOPLE, THESE ARE
NOT PEOPLE THAT YOU CAN MOVE,
NOT THE PEOPLE YOU SHOULD ENGAGE
WITH, THERE ARE LOT OF PEOPLE
WHO WOULD BE MORE IN THE TRUST
THE EXPERTS CATEGORY THAT YOU
CAN LISTEN TO AND WORK WITH OR
THAT YOU COULD ENGAGE ABOUT
THEIR OWN PERSONAL LIFE. AND
PERHAPS PERCENT WAY DIFFERENCE
IN SCIENCE BUT THAT IS NOT WHERE
PEOPLE'S ATTENTION GOES, THIS IS
AN INTERESTING INSIGHT FOR ME.
IF YOU WILL SEE THESE NUMBERS
WERE FROM 2019 BY COINCIDENCE WE
DID THIS WORK IN 2019 AS WE
STARTED THIS. AND OBVIOUSLY WE
NOW HAVE THE SET OF DATA THAT'S
EMERGED AFTER PERIOD OF INTENSE
SCIENCE FOCUS OVER THE PAST TWO
YEARS.
I WANT TO POINT OUT WHAT
HAPPENED TO THESE MIND SETS OVER
THE PAST TWO YEARS, FIRST SAME
BASIC PERCENTAGES EXIST AS
BEFORE BUT THERE'S ABOUT A TEN
PERCENT SHIFT OVERALL, TOWARD
THE MORE SCIENCE POSITIVE SIDE
OF THIS. INTO THE PEOPLE
INTERESTED IN EXPERT ADVICE OR
BELIEVE SCIENCE CAN MAKE A
DIFFERENCE, THEY ARE NOW 10%
MORE PEOPLE IN THAT SECTOR AS A
WHOLE. THAT IS A VERY STRIKING
SHIFT IN TERMS OF DEMOGRAPHICS
OF AUDIENCE INTEREST. SO MAY NOT
SEEM LIKE THAT MUCH BUT IT IS
REALLY GOOD.
CORRESPONDING LOSS OF LESS MORE
IN DIFFERENT POPULATIONSS. WERE
PEOPLE WHO COULD BE MOVED BY
CHANGING BIOINFORMATION. TEAM
SKEPTIC NO CHANGES AT ALL, 12%
BEFORE, 12% AFTER, THAT IS THE
WAY THINGS ARE. HERE ARE A
COUPLE OF OUTCOMES TO BE SERIOUS
ABOUT WHAT WE LEARN. ONE THING
WE LEARNED ABSOLUTELY IS THAT
WHO PEOPLE TRUST ARE THEIR
PRIMARY HEALTHCARE PROVIDERS.
YOU THINK YOUR DOCTOR CARES
ABOUT YOU, THESE ARE THE PEOPLE
WHO CAN MAKE THE BIGGEST IMPACT.
ONE THING IN RETROSPECT WE
PROBABLY COULD HAVE BEEN DONE
BETTER FROM AN ADVOCACY POINT OF
VIEW IS THAT WE ADMINISTERED
VACCINES EARLY ON THROUGH LARGE
MASS SITES OR FARM PHARMACIES,
THEY WERE NOT GIVEN TO PRIMARY
CARE PHYSICIANS YOUR PRIMARY
CARE DOCTOR MIGHT HAVE BEEN A
PERSON WHO COULD HAVE BEEN
PERSUADE MORE EASILY THAN
FACELESS GOVERNMENT
ORGANIZATION, IF YOU ARE SOMEONE
INCLINED TO THAT. ANOTHER THING
IS THAT WHILE INTENSITY OF TRUST
AND SCIENCE HAS INCREASED, THE
INTENSITY O TRUST IS LOWER IN
POPULATIONS THAT ARE
MARGINALIZED IN THE U.S. LIKE
BLACK AND HISPANIC POPULATIONS
PROSCIENCE BUT CONCERNED AND
CONCERNED ABOUT BEING GUINEA
PIGS SO WE HAVE TO BUILD TRUST
WITH THOSE POPULATIONS TO MAKE A
DIFFERENCE. THAT IS THE END OF
MY PRESENTATION. THANK YOU FOR
THIS TIME. I WANT TO SAY THE
CHAN ZUCKERBURG INITIATIVE WE
ARE CONTINUING THIS WORK, WE ARE
THINKING ABOUT WHAT OUR NEXT TEN
YEARS LOOK LIKE, WE ARE EXCITED
BY THINGS LIKE IMAGING WORK AND
MORE ABOUT MEASURING THE HUMAN
BODY IN ACTION. WE ARE EXCITED
ABOUT THINGS SUCCESSFUL AND
SCALING THEM UP, THINGS LIKE THE
RARE IS ONE PROGRAM TO ENGAGE
MORE PATIENTS AND THAT IS AN
EXCITING THING ABOUT BEING IN A
RELATIVELY NEW ORGANIZATION,
RELATIVELY FLEXIBLE
ORGANIZATION, THAT ISN'T TRAPPED
IN ITS OWN SUCCESS, THAT CAN TRY
NEW THINGS, CAN FAIL SOMETIMES.
AND WE REALLY BELIEVE IN STAYING
CLOSE TO THE WORK BUT THAT IS
WITH OTHER SCIENTISTS, WITH
PATIENTS, WITH ADVOCATES, WITH
COMMUNIQUETIES.
WITH THAT I WILL STOP AND --
COMMUNITIES.
T WITH THAT I WILL STOP AND
ANSWER ANY QUESTIONS.
>> THAT WAS A TERRIFIC TALK, DR.
BARGMANN, THANK YOU FOR SHARING
YOUR PERSONAL JOURNEY, I LEARNED
A LOT ABOUT THE PHENOMENAL WORK
BEING DONE AT CCI. GREAT
SESSION. SO WE WILL NOW TAKE
QUESTIONS FROM THE AUDIENCE, I
KNOW THERE WERE A FEW IN THE
CHAT. IF YOU FEEL COMFORTABLE
RAISING YOUR HAND AND UNMUTING
WE CAN TAKE THOSE.
LOOKS LIKE I SEE ONE HAND RAISED
HERE, FATIMA IF YOU WOULD LIKE
THE ASK YOUR QUESTION.
>> THANK YOU FOR THAT
PRESENTATION, DR. BARGMANN. I'M
FATIMA PRESIDENT OF FUTURE
RESEARCH WE ARE AN ADVOCACY
ORGANIZATION EARLY CAREER
RESEARCHERS. SO I REALLY LIKE
THAT YOU MENTIONED THE DIVERSITY
ISSUE, IT TIES INTO THE TRUST
BUILDING ISSUE THAT YOU POINTED
TO. ONE OF THE THINGS THAT WE
PUSH FOR AT FUTURE RESEARCH IS
THE LEADERSHIP AS WELL, SO
LOOKING AT FOR EXAMPLE THE CCI
WEBSITE ON THE SCIENCE
LEADERSHIP TEAM AS WELL AS
BIOHUB LEADERSHIP TEAM I SEE A
LOT OF WHITENESS WE ARE TRYING
TO FIX AS WELL IN OUR SPACES
WHEN CAN WE EXPECT ORGANIZATIONS
TO THAT ARE FUNDING THIS, WHO
AND PUSHING DIVERSITY TO LEAD BY
EXAMPLE IN TERMS OF UPLIFTING
SCIENTISTS OF COLOR INDIGENOUS
SCHOLARS, PEOPLE WHO ARE DOING
THIS WORK AND TRYING TO PUSH
FORWARD MORE RECOMMENDATION AND
DIVERSITY AND EQUITY IN OUR
SPACES?
OPERATOR:
>> VERY GOOD POINT. I WOULD SAY
COUPLE OF THINGS IN RESPONSE.
FIRST IS OUR WORK IN DIVERSITY
IS BEING LED BY DR. HANNAH
VALENTINE, PHYSICIAN SCIENTIST
FROM STANFORD UNIVERSITY AND
BLACK WOMAN. SHE WAS THE FIRST
HEAD OF DIVERSITY AT NATIONAL
INSTITUTES OF HEALTH SO SHE
REPORTED DIRECTLY TO FRANCIS
COLLINS FOR SIX YEARS AND SINCE
STEPPING DOWN SHE'S BEEN WORKING
WITH US DESIGNING PROGRAMS HIGH
LYNN FORMED BY WHAT SHE KNOWS
ABOUT BIOMEDICAL RESEARCH
SYSTEM. SO HE IS NOT TECHNICALLY
-- TECHNICALLY CONSULTING STAFF
MEMBER BUT SHE IS AMAZING. I%
CAN'T BELIEVE HOW LUCKY WE ARE
TO HAVE HER TONIGHT. I AGREE
WITH YOU ABOUT THE OVERALL
LEADERSHIP AND SCIENCE IN CHAN
ZUCKERBURG INITIATIVE, WE HAVE
THREE PEOPLE ONE IN OPERATIONS
ONE IN ENGINEERING AND ONE AS
HEAD OF PROGRAMS AND ALL LEE OF
US WERE HIRED FIVE YEARS AGO AND
WE ARE ALL WHITE AND I APOLOGIZE
FOR THAT. I WILL SAY AT THE NEXT
LEVEL WE HAVE A NUMBER OF REALLY
GREAT SCIENCE PROGRAM MANAGERS,
INCLUDING MEMBERS OF SEVERAL
BLACK PROGRAM MANAGERS WITH
Ph.D.s WHO ARE MOVING UP
THROUGH THE SYSTEM. AND LATINX
AS WELL. SO I THINK WE ARE ON A
PATH BUT STILL IN THE MIDDLE
MANAGEMENT AND WE HOPE THEY WILL
MOVE UP. THE THIRD THING TO SAY
IS, ONE OF THE THINGS THAT
HANNAH POINTED OUT AND OTHERS
POINTED OUT TO US IS THAT YOU
REALLY NEED TO BE SUPPORTING
PEOPLE THROUGHOUT THEIR CAREERS,
IT IS EASY FOR PEOPLE TO GET
BEHIND K-12 EDUCATION BUT WE ARE
FOCUSING ON SOME OF THE MORE
NEGLECTED AREAS AND THE SCIENCE
DIVERSITY LEADERSHIP RFA WHICH
IS ONE OF THE THINGS YES DOING
NOW. SPECIFICALLY DESIGNED
AROUND SUPPORTING ASSISTANT AND
ASSOCIATE PROFESSORS TO HAVE
EXTRA BANDWIDTH, EXTRA TIME,
EXTRA GRANT FUNDING TO ALULA
THEM TO TAKE LEAD SHE WERE ROLES
AT THE NEXT STAGE. AKNOW
REGIMENT IS START BUT NOT AT THE
END OF THE TRAINING.
>> NO, THANK YOU FOR THAT
ANSWER. I SAW THE RFA AND GOT
REALLY EXCITE AND REALIZE I
COULDN'T APPLY TO IT SO THAT WAS
A BUM HE WERE BUT IT IS GOOD TO
SEE THAT THERE ARE RFAs GOING
OUT LIKE THAT.
>> THERE IS A COUPLE OF WRITTEN
QUESTIONS, SHOULD I ANSWER THEM?
SRI ASKS COVID HAD NEUROLOGICAL
EFFECTS IN COGNITION. WHAT PLANS
THE ADDRESS THIS IF ANY. COVID
DOES NOT INFECT NEURONS, THAT
WAS ONE OF THE THINGS THAT CAME
OUT OF AN OPEN RESOURCE WE MADE
EARLY ON CALLED THE COVID CELL
ATLAS BECAUSE THE RECEPTORS ARE
NOT IN NEURONS THE VASCULATURE
OF THE BRAIN BEING AFFECTED SO
MICROVESSELS, MICROSTROKES AND
BLEEDS, THAT IS A PRETTY SERIOUS
BUSINESS THOUGH WE ARE GETTING
BETTER AT REHABILITATION OF
THOSE THAN WE USE TO BE. THE
MAIN WAY WE ENGAGE WITH NOW IS
TWOFOLD. THE FIRST IS THAT WE
ARE SUPPORTING A LARGE PROGRAM
AT THEU BIOBANK WHICH IS A
500,000 PERSON HEALTH PATIENT
COHORT, WHERE THEY ARE DOING
STUDIES BEFORE AND AFTER COVID
ON LARGE NUMBER OF PATIENTS TO
SEE WHAT CHANGED. BECAUSE THEY
HAD ALREADY BEEN IMAGING THESE
PATIENTS AND DOING A LOT OF
DETAILED ANALYSIS SO THEY HAVE
BEFORE AND AFTER PICTURES IN A
LOT OF DETAIL.
SECOND, WE ARE WORKING WITH
PATIENT GROUPS, WITH A NUMBER OF
LONG COVID PATIENT ADVOCACY
GROUPS, TO HELP THEM ORGANIZE
AROUND WHAT THEY VIEW AS THE
REAL ISSUES. NOT NECESSARILY
WHAT A DOCTOR VIEWS THE ISSUES.
MY FAVORITE EXAMPLE OF
DIFFERENCE BETWEEN PATIENT AND
DOCTOR IS THAT IF YOU HAVE
PARKINSON DISEASE, A DOCTOR OR
STRANGER NOTICE IT IS TREMOR BUT
WHAT THE PATIENTS COMPLAIN ABOUT
IS FATIGUE. IT IS A DIFFERENT
SYSTEM. IT IS NOT EASY TO SCORE
BY THIRD PARTY BUT YOU WANT TO
FOCUS TOWARD WHAT IS IMPAIRING
PEOPLE'S QUALITY OF LIFE SO IF A
-- THE PATIENT FOCUS IS THERE AT
THE MOMENT. AVA ASKED DOES CCI
DO OWN RESEARCH OR DONE BY
UNIVERSITYS? IT IS DONE BY
OTHERS.
WE DON'T HAVE A PHYSICAL
RESEARCH SITE BUT THE CHAN
ZUCKERBURG BIOHUB IS A HYBRID,
IT IS AN INDEPENDENT MEDICAL
RESEARCH ORGANIZATION BUT IT IS
-- THEY ARE LIKE OUR CLOSE
COUSINS ESSENTIALLY. THAT IS A
FRACTION OF THE RESEARCH THAT
CCI SUPPORTS, IT IS ABOUT 20%
THAT CCI SUPPORTS WITH 80% BEING
INTERNATIONAL GRANT FUNDING OF
VARIOUS SORTS.
RICHARD ASKS SHOULD SCIENTISTS
MIX EMOTIONAL STORIES WITH
SCIENCE DATA TO ATTRACT THOSE
MOVED BY STORIES AND EXPERIENCE?
MY UNDERSTANDING IS THE ANSWER
TO YOUR QUESTION IS YES. THERE
ARE A LOT OF PEOPLE IN THIS CALL
WHO ARE MORE EXPERT THAN I AM
ABOUT STORY TELLING. I THINK
THERE IS A LOT TO SAY ABOUT
EMOTIONAL STORIES AND VALUE OF
REACHING PEOPLE THROUGH THAT
MECHANISM. YOU HAVE TO BE TRUE
TO YOURSELF. IF YOU ARE NOT A
STORY TELLER THEN IT IS NOT
GOING TO WORK. THAT IS FOR
EXAMPLE ONE OF THE THINGS WE
HAVE SEEN WITH RARE DISEASE
PATIENTS.
IT HAS BEEN AMAZING HOW HAY WILL
ENGAGE WITH STORY TELLING. ON A
PARALLEL TRACK TO HELP PEOPLE
UNDERSTAND WHAT SCIENCE IS FOR.
SO THEY ARE TRUE TO THEMSELVES
WHILE ALLOWING SCIENTISTS TO BE
TRUE TO MEASUREMENT. I HAVE A
FEELING RICHARD NAKAMORA HAS A
BETTER ANSWER TO THAT QUESTION
THAN I DO, JUST SAYING.
>> GREAT. I THINK WE CAN TAKE
ONE MORE QUESTION, IF POSSIBLE
FROM SOPHIA.
>> HI, YES, THANK YOU SO MUCH
FOR THAT WONDERFUL TALK AND
SHARING A LOT WITH US. I GUESS I
WAS REALLY EXCITED TO SEE HOW
YOU SHARED WHO YOU BROUGHT
PEOPLE TOGETHER AND TRYING TO
AGREE TRYING TO NOT REINVENT THE
WHEEL WITH EVERYTHING SO
WONDERING IF YOU HAVE ADVICE OF
LIKE YOUNG STUDENTS COMING IN,
HOW DO YOU DEAL WITH LIKE OKAY
THERE'S ALL THIS STUFF OUT
THERE, HOW DO I APPROACH THIS
WITHOUT TRYING TO REINVENT THE
WHEEL OR DEVELOP SOMETHING THAT
MAYBE IS ALREADY STARTED
SOMEWHERE ELSE BETTER AND I CAN
JOIN IN AND HELP.
>> I WISH -- THE ANSWER TO YOUR
QUESTION IS I WISH I KNEW THE
ANSWER TO YOUR QUESTION, IT IS
AN ITERATIVE PROCESS YOU START
THE GET INTERESTED IN SOMETHING
YOU TRY TO FIND OTHER PEOPLE WHO
ARE INTERESTED MANY THE SAME
THING OR READ AND LEARN MORE
TEND IT IS AN EXPERIMENT
SOMETIMES YOU REALIZE THAT
EXPERIMENT IS DONEND A SOMETIMES
YOU REALIZE IT HASN'T AND YOU
KIND OF KEEP PUSHING AND KEEP
LOOKING. I HAVE BEEN IMPRESSED
AT THE STUDENT LEVEL TO -- I
HAVE BEEN PRETTY IMPRESSED WITH
THE WAY THAT THE STUDENT GROUPS
AND POST DOC GROUPS WITHIN
ROCKEFELLAR WHERE I AM AND OTHER
INSTITUTIONS, SORT OF STEPPED UP
TO START TO TAKE CERTAIN KINDS
OF LEADERSHIP ROLES IN AREAS OF
ADVOCACY, I THINK BOTH HERE AND
NUMBER OF OTHER INSTITUTIONS I
KNOW ABOUT THE SORT OF RESPONSE
TO THE GEORGE FLOYD EVENTS FROM
THE STUDENT GROUPS WAS STRONG
CONSTRUCTIVE AND CREATIVE. SO
JUST THEIR WILLINGNESS TO DIVE
IN AND DO THE WORK MADE IMPACT.
SOMETIMES YOU CAN'T EXPECT FROM
DIFFERENT GENERATION TO SEE
THINGS YOU NEED TO SEE. THAT'S
TRUE OF -- THERE'S OTHER ISSUES
WHERE I FEEL LIKE I THINK WE
HAVE ALL SEEN HOW THE STRENGTH
OF PASSION AN MOTIVATION, IT WAS
JUST LIKE STRONGER IN YOUNGER
PEOPLE THAN IN MORE SENIOR
PEOPLE. SO I THINK YOU CAN START
BY GETTING WITH OTHER STUDENTS
IS MY FEELING BUT IT CAN GO ON
AS WELL.
>> SO SRI LAST QUICK QUESTION
FOR SRI.
HUE FOR ASKING THAT ENTREPRENEUR
RESIDENCE, SEND ME AN EMAIL AND
EMERGING TECHNOLOGIES CCI WE ARE
VERY EXCITED ABOUT USING AI AND
ML, WE ARE NOT DOING COGNITIVE
NEUROSCIENCE AND NEUROONCOLOGY
AT THE MOMENT. WE ARE VERY
BIOMEDICAL. AND WE -- CANCER WAS
AN AREA SPECIFICALLY WHEN WE
LOOK AROUND WE ARE LIKE THIS IS
INCREDIBLY WELL SUPPORTED AREA.
70% OF BIOTECHS ARE IN CANCER.
HUGE AMOUNT OF NIH FUNDING.
LET'S NOT PRETEND WE'LL MAKE A
DIFFERENCE HERE IF WE DON'T HAVE
SOME GREAT NEW IDEA. THE
COGNITIVE NEUROSCIENCE IS MORE
PSYCHOLOGY AND WE HAVE BEEN MORE
MECHANISTIC AT THIS POINT.
SCIENCE POLICY POP FEST. VERY
GOOD. THANK YOU GUYS I SHOULD
LET THE NEXT SPEAKER. I'LL MOVE
ON.
>> THANK YOU SO MUCH.
>> DR. BARGMANN, THANK YOU,
FANTASTIC.
>> THANK YOU ALEX AND I SAHBA FOR
THE INVITATION.
>> WE CAN RECONVENE AT 1:05 FOR
THE NEXT SESSION.
>>LORI MCMAHON IS
CHAIRPERSON OF THE
GOVERNMENT PUBLIC AFFAIRS
COMMITTEE SOCIETY OF
NEUROSCIENCE AND INVOLVE
PROFESSOR NEUROSCIENCE AND VICE
PRESIDENT OF RESEARCH AT THE
MEDICAL UNIVERSITY OF SOUTH
CAROLINA. PREVIOUSLY SHE SERVED
MORE THAN 23 YEARS AS A FACULTY
MEMBER AND ADMINISTRATOR
UNIVERSITY OF ALABAMA
BIRMINGHAM, THE GARMAN LAUDER
PROFESSOR OF NEUROSCIENCE AND
DEAN OF THE UAB GRADUATE SCHOOL.
SHE'S A FEDERALLY FUNDED BASIC
AND TRANSLATIONAL NEUROSCIENCE
RESEARCHER WITH NUMEROUS AWARDS
FROM THE NATIONAL INSTITUTES OF
HEALTH AND OTHER AGENCIES
THROUGHOUT HER CAREER. AND IS
NATIONALLY INTERNATIONALLY
RECOGNIZED FOR WORK IN AREAS OF
NEURODEGENERATIVE DISEASE AND
NEUROPSYCHIATRIC ILLNESS WITH
FOCUS ON SYNAPTIC PLASTICITY AND
SEX DIFFERENCES. GRADUATING SUM
MA CUM LAUDE FROM SOUTHERN
ILLINOIS UNIVERSITY WITH BA IN
BIOLOGY AND CHEMISTRY, DR.
MCMAHON EARNED Ph.D. IN
NEUROPHARMACOLOGY DEPARTMENT OF
PHARMACOLOGICAL AND
PHYSIOLOGICAL SCIENCE AT ST.
LOUIS UNIVERSITY HEALTH SCIENCE
CENTER. DEPARTMENT OF
NEUROBIOLOGY AT DUKE MEDICAL
CENTER. THRILLED TO H HAVE HER
AS HER SPAR eSPEAKER TODAYAS OUR SPEAKER T ODAY.
>> THANK YOU FOR THE INVITATION.
I'M SO HONORED TO BE HERE AND I
HAVE LEARNED A TREMENDOUS AMOUNT
FROM THE SPEAKERS SO FAR IT HAS
BEEN THRILLING TO LISTEN TO
COLLEAGUES AND BEING HERE
HEARING WHAT THEY HAVE TO SAY
AND DR. BARGMANN'S PRESENTATION
AND THE PREVIOUS HOUR WAS JUST
ABSOLUTELY FANTASTIC. AND
ENERGIZING.
SO I'M THRILLED TO HAVE AN
OPPORTUNITY TO SHARE WITH ALL OF
YOU THE GREAT ACTIVITIES
SPONSORED BY SOCIETY FOR
NEUROSCIENCE AND HONORED TO
SERVE AS CHAIR OF THE PUBLIC
AFFAIRS COMMITTEE. PERMLY I HAVE
BEEN HUGE ADVOCATE, PASSION OF
MINE SINCE BEING ON FACULTY AND
SEEING THE NEED TO SHARE WHAT WE
DO TO OTHERS SO THEY UNDERSTAND
AND I FEEL A PERSONAL SENSE OF
RESPONSIBILITY GIVEN THE
PRIVILEGE TO USING FEDERAL
DOLLARS UNDERSTANDING THE BRAIN
IS A RESPONSIBILITY TO SHARE
WITH OTHERS AND WHO NEED TO
UNDERSTAND WHAT WE ARE DOING.
AND SUPPORT WHAT WE ARE DOING SO
I TRIED TO SHARE MY PASSIONS
WITH ALL OF MY Ph.D. STUDENTS
AND MY LABORATORY, MY COLLEAGUES
AT MY INSTITUTION AND NOW HONOR
TO LEAD THE GOVERNMENT PUBLIC
AFFAIRS COMMITTEE. I WILL SHARE
ACTIVITIES AND ENJOY DISCUSSING
THIS WITH YOU DURING THE
QUESTION-AND-ANSWER PERIOD.
SOME BEST PRACTICES FIST
IDENTIFYING CONTACT POLICY MAKER
THOSE IN THE U.S. WE LIVE IN
STATES WHO HAVE DECISION MAKERS
WHO HAVE ELECTED POLICY MAKERS
SO GETTING TO KNOW YOUR POLICY
MAKER ESPECIALLY THE POLICY
MAKER THAT SERVE IT IS LOCAL
AREA WHERE YOU YOUR INSTITUTION
IS LIVING. SO SCHEDULE A MEETING
WITH THOSE POLICY MAKERS, YOU
ARE A CONSTITUENT OF THAT AREA,
SO AG CONTACT POLICY MAKERS FIND
THEM ON THE WEB CONTACT OFFICES
AND ASK TO MAKE AN APPOINTMENT
WITH THEM TO SHARE WITH THEM
YOUR ADVOCACY FOR SUPPORTING
RESEARCH. CRAFT YOUR ELEVATOR
PITCH. SOME OF YOU Ph.D.
STUDENTS OR HAVE POST-DOCS MAY
HAVE PARTICIPATED IN A THREE
MINUTE THESIS COMPETITION. AT
YOUR INSTITUTION, THAT IS KIND
OF A SAME THING AS ELEVATOR
PITCH, A TWO TO THREE MINUTE
PITCH USING LANGUAGE NON-EXPERT
CAN UNDERSTAND. WHICH HEARD
ABOUT THAT ALREADY. YOU CAN'T
USE FANCY LANGUAGE JARGON,
ACRONYM IT IS LANGUAGE YOU USE
WHEN YOU SPEAK TO YOUR
COLLEAGUES IN YOUR FIELD, MAY BE
EVEN TO YOUR COMMITTEE MEMBERS
IF YOU ARE A Ph.D. STUDENT,
BUT IT IS A LANGUAGE THAT
NON-EXPERTS CAN UNDERSTAND SO
HAS TO BE CONCISE COMPELLING
PERSONAL STORIES A GREAT THAT
WAS A QUESTION THAT WAS RAISED
DURING DR. BARGMANN'S
PRESENTATION. THOSE PERSONAL
STORIES ARE RELATABLE AND ONE I
SHARE MYSELF IS ABOUT MY OLDEST
SON WHO HAS EPILEPSY IN THE
CHALLENGES OF CONTROLLING HIS
SEIZURES AND MEDICINES THAT
CONTROL HIS SEIZURES, CAUSE
WEIGHT GAIN AND THAT MAKES HIM
NOT WANT TO TAKE HIS MEDICINE, I
HAVE HAD DETAILED CONVERSATIONS
ON THAT LEVEL WITH POLICY MAKERS
BEFORE. YOU CAN SEE THEY CAN
UNDERSTAND SO ADVOCATING FOR
BRAIN RESEARCH AND IN MY CASE
WITH MY STORY FOR EPILEPSY IS AN
EASY ONE TO MAKE GIVEN MY
PERSONAL STORY. LAB TOURS ARE
TERRIFIC, FOR POLICY MAKERS THEY
DON'T KNOW HOW TO ENVISION WHAT
WE DO. WE SAY WET LAB OR BENCH
LAB OR BASIC SCIENCE OR
TRANSLATIONAL SCIENCE, THESE
WORDS DON'T OFTEN MEAN ANYTHING
TO NON-EXPERTS INCLUDING
CONGRESS PEOPLE SO HAVING A TOUR
INVITING THEM TO A TOUR TO SEE
RESEARCH SPACE, AND MAYBE EVEN
WAIF YOU IN ACTION LOADING A JOB
FOR WESTERN BLOT OR SOMETHING.
LEVERAGE LO L CAMMEDIA, PUBLIC
OPINION PIECES ON NEUROSCIENCE
PRIORITIES. THAT IS OFTEN
SOMETHING THAT IS POSSIBLE TO
DO. AND YOU CAN WORK YOUR PUBLIC
AFFAIRS FOLKS AT YOUR
INSTITUTIONS TO FIGURE OUT THE
PATH FORWARD HOW TO DO THAT.
WITH LOCAL COMMUNITY LOCAL MEDIA
TO GET YOUR PASSION OUT THERE
ABOUT ADVOCATING FOR RESEARCH SO
WE HAVE REALLY EXCITING PROGRAM,
EARLY CAREER POLICY AMBASSADORS
PROGRAM. THIS IS A TEN MONTH
SOCIETY FOR NEUROSCIENCE PROGRAM
FACILITATING EARLY CAREER
SCIENTISTS TO INTERACT WITH
LEADING NEUROSCIENCE ADVOCATES
AND MEET THEIR POLICY MAKERS,
YOU CAN SEE A PICTURE ON THIS
SLIDE HERE OF SOME OF OUR ECPA
TRAINEES.
THESE TRAINEES GAIN SKILLS TO
ADVOCATE FOR SCIENCE AND
NEUROSCIENCE PRIORITIES, THEY
PARTICIPATE IN SFN HILL DAY
WHICH IS MARCH 22-24 AT ECPA AND
THE GOVERNMENT PUBLIC AFFAIRS
MEMBERS WILL MEET WITH OUR
DECISION MAKERS, SENATORS
FEDERAL SENATORS AND THOSE IN
THE HOUSE OF REPRESENTATIVES THE
ECPA AMBASSADORS CONDUCT TO
ADVOCACY RELATED PROJECTS IN
THEIR HOME DISTRICT OR STATE.
PART OF THE APPLICATION PROCESS.
THE APPLICATION PROCESS STARTS
IN THE FALL AND DECISIONS ARE
MADE IN JANUARY, WE JUST STARTED
NEW ECPA CLASS. ALL OF THOSE
INDIVIDUALS WILL BE JOINING US
NEXT WEEK IN HILL DAY.
THOSE ECPA MEMBERS ARE GRADUATE
STUDENTS, SOMETIMES JUNIOR
ASSISTANT PROFESSORS AN
SOMETIMES MAYBE A SENIOR
UNDERGRADUATE.
SO SFN ANNUAL HILL DAY, I
MENTIONED THAT, THIS YEAR IT IS
THE 16TH ANNUAL HILL DAY SOCIETY
FOR NEUROSCIENCE, IT IS NEXT
WEEK, MARCH 22-24, IT IS VIRTUAL
THIS YEAR LAST LAST YEAR DURING
PANDEMIC BUT LOOK FORWARD TO
WALKING THE HALLS OF CONGRESS
NEXT YEAR.
SO IT IS OUR HALLMARK AT HAVE
CHASSI OF THE YEAR. ADVOCATES
MEET WITH OFFICES TO ADVOCATE
FOR NEUROSCIENCE FUNDING
PRIORITIES.
WE LAY THE GROUND WORK CREATING
PERSONAL CONNECTIONS, HOSTING
LAB TOURSER, THIS IS WHERE WE
HAVE AN OPPORTUNITY TO INVITE
THE STAFFERS, AND SENATORS AND
REPRESENTATIVES TO VISIT
LABORATORIES AND WE CAN BECOME
RESOURCE FOR OFFICES.
IF THEY NEED INFORMATION, NEED
DEEPER UNDERSTANDING THAT
RELATIONSHIP IS BEING BUILT AND
CAN REACH OUT TO US FOR
CONVERSATIONS.
SO THE CONGRESSIONAL ASKS THIS
YEAR, AS YOU HEARD EARLIER THAT
FISCAL YEAR 22 BUDGET WAS JUST
PASSED ON MARCH 15TH. SO NOW
DISCUSSIONS ARE JUST GETTING
STARTED FOR PHYSICAL YEAR 23
BUDGET SEVERAL MONTHS BEHIND. SO
TYPICALLY WHEN SOCIETY FOR
NEUROSINCE AND GOVERNMENT PUBLIC
AFFAIRS COMMITTEE GOES TO
CAPITOL HILL OR HAS VIRTUAL HILL
DAY EVENTS WE MAKE SPECIFIC
ASKS. WE HAVE APPROPRIATIONS
ASKS HERE ON THE SLIDE YOU SEE
XX BILLION FOR NIH, THAT'S
BECAUSE WE ARE STILL DETERMINING
THE SOCIETY FOR NEUROSCIENCE AND
OTHER LEADERS IN RESEARCH, OTHER
ORGANIZATIONS COMMUNICATING AND
DECIDING WHAT ASK WILL BE FOR
FISCAL YEAR 23. BUT TYPICALLY
THAT ASK IS INCREASE OF SEVERAL
BILLION DOLLARS AND WE WILL BE
SHARING THAT AS SOON AS OUR
LEADERS COME TOGETHER AND DECIDE
WHAT THAT ASK SHOULD BE FOR
FISCAL YEAR 23. ALSO IN THAT ASK
ARE SEVERAL MILLION DOLLARS FOR
BRAIN INITIATIVE AND IN THE 21ST
CENTURY CURES ACT. 11 BILLION
FOR THE NATIONAL SCIENCE
FOUNDATION, AND SEVERAL MILLION
FOR THE VA MEDICAL PROSTHETIC
RESEARCH PROGRAM. AGAIN FISCAL
YEAR 23.
WE ARE STRONG ADVOCATORS FOR
ANIMALS IN RESEARCH SO WE ARE
ASKING FROM CONTINUED WELL
SUPPORT FOR THE CONTINUED WELL
REGULATED ETHICAL USE OF ANIMALS
IN RESEARCH. THERE IS A LOT OF
ONGOING DISCUSSION ABOUT THAT
AND WE WANT TO BE PART OF THAT
AND WE WANT TO BE INFLUENCERS TO
MAKE SURE THAT CONTINUED WELL
REGULATED ETHICAL USE OF ANIMALS
IN RESEARCH IS SUPPORTED. THE
SOCIETY FOR NEUROSCIENCE
SUBMITTED THE FISCAL YEAR 23
REPORT LANGUAGE O FOCUS ON
IMPORTANCE OF NON-HUMAN
PRIMATES, I THINK THIS WAS MADE
CLEAR TO ALL OF US. WITH THE
COVID VACCINE TRIALS AND THE
IMPORTANCE OF NON-HUMAN PRY
MATES, AND RESEARCH ON THE LONG
HAUL COVID-19 SYMPTOMS.
WE HEARD ABOUT THAT, A LITTLE
BIT IN THE LAST HOUR OR TWO,
ABOUT THE COGNITIVE IMPAIRMENT
THAT MANY HAVE EXPERIENCED AS A
RESULT OF COVID-19 INFECTION.
THE MENTAL HEALTH CONSEQUENCES
OF COVID-19 PANDEMIC DESERVES
SIGNIFICANT ATTENTION.
WE ARE ASKING FOR SUPPORT OF THE
RISE ACT. AUTHORIZATION OF
NEARLY 25 BILLION TO HELP
RECOVER RESEARCH EFFORTS
IMPACTED BY COVID-19 INCLUDING
10 BILLION FOR THE NIH AND 3
BILLION FOR THE NSF. OFFER LAB
TOUR AGAIN WHEN IT IS POSSIBLE
ON SOME OF OUR INSTITUTIONS AND
CAMPUSES WE HAVE ALREADY
REOPENED OUR LABS TO VISITORS. I
KNOW AT MY CAMPUS AT MEDICAL
UNIVERSITY SOUTH CAROLINA IN
CHARLESTON WE NOW ARE ALLOWING
LAB VISITORS THAT WAS REVERSED
AS COVID PANDEMIC REQUIREMENTS
WERE REVERSED TWO WEEKS AGO SO
ENCOURAGE ALL OF YOU TO THINK
ABOUT OFFERING A LAB TOUR TO
YOUR CONGRESSIONAL LEADERS WE
ALSO WILL ASK THE SENATORS AND
THE REPRESENTATIVE
(NO AUDIO)
>> SOMEHOW I WAS MUTED, I DON'T
KNOW HOW MUCH OF THAT YOU LOST.
BUT JOINING NEUROSCIENCE RELATED
TALK AS WE ASK SENATORS TO JOIN
THE NIH CAUCUS, REPRESENTATIVES
TO JOIN NEUROSCIENCE CAUCUS.
THESE ARE OUR ASKS THAT WE SHARE
DURING OUR MEETINGS NEXT WEEK
DURING HILL DAY. SO AS ADVOCACY
RESOURCES.
ADVOCACY ACTION CENTER I ASK ALL
OF YOU VISIT THAT, PRE-WRITTEN
LETTERS LEGISLATIVE TOPICS ASK
NUMBERS TO ACT ON. YOU CAN SENDS
PERSONALIZED MESSAGES TO YOUR
POLICY MAKERS. NEURAL ONLINE,
THERE'S WEBINARS, ARTICLE,
VIDEOS ON ADVOCACY BEST
PRACTICES AND TOPICS. SO RICH
INFORMATION THERE. FACT SHEETS
ARE AVAILABLE AND IMPORTANT
INFORMATION ON SUPPORTED
AGENCIES AND INITIATIVES. THE
NIH NSF VA MEDICAL AND
PROSTHETIC RESEARCH PROGRAM, THE
BRAIN INITIATIVE ANNULS AND
RESEARCH. THOSE OF US NEW TO
ADVOCACY, SOMETIMES WE DON'T
KNOW THE WORDS TO USE, AND SO
THE SOCIETY FOR NEUROSCIENCE HAS
A LOT OF THAT INFORMATION
AVAILABLE TO YOU ON THE WEBSITE
SO PLEASE I ENCOURAGE ALL OF YOU
TO GO THERE AND LOOK AT THE
MATERIALS AVAILABLE. THE SAME
FACT SHEETS SPECIFIC DATA ON
SCIENCE FUNDING, REALLY HELPFUL,
SO THESE STATE SPECIFIC DATA ARE
WHAT WE SHARE WHEN WE SPEAK TO
THE SENATORS AND REPRESENTATIVES
FROM PARTICULAR STATES, SO THESE
DOLLARS THESE RESEARCH DOLLARS
HELP SUPPORT JOB CREATION IN
THEIR STATES IN ADDITION TO
HELPING US GENERATE NEW
KNOWLEDGE ABOUT THE BRAIN. SO
THAT INFORMATION SAVES SPECIFIC
INFORMATION IS HELPFUL AND MAY
HELP YOU TO HAVE THOSE
CONVERSATIONS WITH YOUR DECISION
MAKERS AND YOUR STATE. SO THAT'S
MY LAST SLIDE. I WILL STOP
SHARING MY SCREEN IN CASE THERE
ARE SOME QUESTIONS.
>> THANK YOU DR. MACK MAN FOR
YOUR TALK -- MCMAHON FOR YOUR
TALK. IT WAS INFORMATIVE AND
APPRECIATE YOU BEING HERE.
>> I APPRECIATE IT TOO AND THANK
THE SOCIETY FOR NEUROSCIENCE FOR
ALL THE WORK THEY DO TO HELP US
BE ADVOCATES FOR NEUROSCIENCE
RESEARCH.
>> IF YO YOU HAVE A QUESTION USE
THE RAISED HAND FEATURE, I WANT
TO ASK THE FIRST QUESTION. SO
I'M CURIOUS ABOUT THE
DIFFERENCES BETWEEN BEING A
SCIENCE ADVOCATE AS A GRADUATE
STUDENT VERSUS A PI.
>> THAT IS A REALLY GOOD
QUESTION. TO ME THERE'S NO BIG
DISTINCTION THERE. I THINK
SOMETIMES STUDENTS ARE A LITTLE
BIT MORE TIMID BUT SOMETIMES
ALSO STUDENTS FEEL THEY DON'T
HAVE AS MANY BARRIERS SO WE ALL
HAVE A RESPONSIBILITY TO BE AND
ADVOCATE WHETHER WE ARE A
STUDENT, WHETHER WE ARE A POST
DOC, A JUNIOR FACULTY OR SENIOR
FACULTY, THIS IS HOW WE USE OUR
VOICES, THIS IS HOW WE HELP
EDUCATE OUR DECISION MAKERS TO
MAKE SURE THAT SUPPORT WE NEED
TO CONTINUE THE WORK WE DO IS
THERE. THE SOCIETY THIS IS ONE
OF OUR MISSION PILLARS AS
ADVOCACY AND THAT'S THE REASON
THAT THE RESOURCES ARE WIDELY
AVAILABLE TO ALL OF US TO HELP
US IMPROVE OUR SKILLS BEING AND
ADVOCATE. I WILL SAY DURING
HILL DAY, THE SENATORS AND THE
REPRESENTATIVES AND THEIR STAFF,
THEY ARE REALLY EXCITED TO HEAR
FROM OUR STUDENTS. THE STUDENTS
ARE PASSIONATE, THERE ARE
CURIOUS, THEY REALLY LOVE
HEARING WHAT THE STUDENTS HAVE
TO SAY, WHAT THE RESEARCH IS
THEY ARE TRYING TO DO, WHAT THE
KNOWLEDGE IS TRYING TO GENERATE
THOSE OF YOU LISTENING TODAY
THAT ARE STUDENTS AND POST-DOCS
PLEASE DON'T HESITATE TO REACH
OUT TO ME. TO SOCIETY IF YOU
NEED HELP AND SOME
ENCOURAGEMENT.
>> I HAVE A FOLLOW-UP QUESTION
TO ASK. Z A GRADUATE STUDENT IS
IT USEFUL TO REACH TO US
INDIRECTLY AND SET UP A LAB
TOUR, TO INCORPORATE SOME SFNs
INPUT IN THE LAB.
>> REACHING OUT TO THE SOCIETY
ABSOLUTELY. MY SFN COLLEAGUES
ARE ON THE CALL RIGHT NOW,
REACHING OUT TO SOCIETY OR TO ME
DIRECTLY, IS EASY TO DO. AND ASK
QUESTIONS AND ASK SUPPORT AND
HOW TO GO ABOUT DOING A LAB
TOUR. DURING COVID THAT WASN'T
POSSIBLE BUT THERE WERE CREATIVE
WAYS THAT OTHERS HAVE USED,
INCLUDING WORK THAT WE DID AT MY
INSTITUTION WHERE WE USE CELL
PHONES ABOUT MADE VIDEOS OF
STUDENTS WORKING AT THE BENCH
INTERVIEWING STUDENTS,
INTERVIEWING FACULTY AND WE
SHARE THOSE VIDEOS WITH OUR
DECISION MAKERS. WE EVEN USE
THOSE VIDEOS TO SHARE WITH HIGH
SCHOOL STUDENTS WHO COULDN'T
VISIT THE LAB AND SEE WHAT
RESEARCH IS LIKE. THERE'S WAYS
TO BE CREATIVE. WE ARE HAPPY TO
SHAKE AND TALK THROUGH HOW YOU
WOULD GO ABOUT SETTING UP A LAB
TOUR, HOW YOU SHOULD ORGANIZE IT
AND HOW TO GET PREPARED.
>> THANK YOU.
SRI I SEE YOUR HAND IS RAISED IF
YOU CAN UNMUTE AND YOUR
QUESTION.
>> THANKS, ALEX. DR. MCMAHON, I
HAVE A BACKGROUND IN
NEUROSCIENCE POLICY AND
ADVOCACY. BUT BY NO MEANS AM I
EARLY CAREER. SO IF I WANTED TO
BE INVOLVED WITH THE SFN ALL
THOSE THREE DOMAINS, WHAT
MECHANISMS CAN I USE?
>> THANK YOU FOR THAT. WE WANT
AS MANY ADVOCATES AS POSSIBLE. I
WOULD ASK YOU EMAIL ME AND EMAIL
ADVOCACY AT SFN.ORG AND WE WILL
REACH OUT TO YOU AND GET
MEETINGS AND DISCUSS
OPPORTUNITIES.
>> THANK YOU SO MUCH.
>> ABSOLUTELY. THANK YOU.
>> WONDERFUL. I THINK WE ARE
GOING THE TAKE A SHORT BREAK
BEFORE OUR NEXT SESSION SO IF
EVERYONE CAN PLEASE JUST MUTE
YOURSELVES TURN OFF CAMERAS AND
JOIN BACK AT 1:30. THANK YOU,
DR. MCMAHON AGAIN FOR BEING HERE
WITH US.
WE APPRECIATE IT.
>> WELCOME BACK, EVERYONE. I
WANT TO START BY INTRODUCING
JENNIFER POLLACK. TEN YEARS OF
LEGISLATIVE AND POLITICAL
EXPERIENCE TO HER POSITION AS
DIRECTOR ACCESS POLICY FOR THE
ALZHEIMERS ASSOCIATION AND
ALZHEIMERS IMPROVEMENT. IN THIS
CAPACITY SHE WORKS TO DEVELOP
FEDERAL POLICIES FOR AIM AND
ASSOCIATION AND WORKS WITH
MEMBERS OF CONGRESS TO MOVE KEY
AIM FEDERAL LEGISLATIVE
PRIORITIES INCLUDING EQUITY
NEUROSCIENCE ALLS HIGHERS
CLINICAL TRIALS ENACT.
WITHOUT FURTHER ADDUCE I WOULD
LIKE TO INTRODUCE JENN.
>> THANK YOU SO MUCH FOR HAVING
ME HERE. MANY OF YOU MAY BE
FAMILIAR WITH THE ALZHEIMERS
ASSOCIATION BUT FOR THOSE WHO
ARE NOT, WE ARE THE WORLD
LEADING VOLUNTARY HEALTH
ORGANIZATION AND ALZHEIMERS CARE
SUPPORT AND RESEARCH. OUR
MISSION IS TO ELIMINATE
ALZHEIMERS AND OTHER DEMENTIA
THROUGH THE ADVANCEMENT OF
RESEARCH TO PROVIDE AND ENHANCE
CARE AND SUPPORT FOR ALL
AFFECTED AND TO REDUCE THE RISK
OF DEMENTIA FOR THE PROMOTION OF
BRAIN HEALTH. AIM IS ADVOCACY
AFFILIATE OF THE ALZHEIMERS
ASSOCIATION. SO WE WORK IN
STRATEGIC PARTNERSHIP TO MAKE
ALZHEIMERS A NATIONAL PRIORITY.
TOGETHER THE ASSOCIATION AIM
ADVOCATE POLICIES TO FIGHT
ALZHEIMERS DISEASE. TODAY I WANT
TO TALK ABOUT SOME WAYS THAT
ADVOCACY AND RESEARCHERS LIKE
YOURSELVES CAN WORK TOGETHER SO
I WILL TALK ABOUT IT IN THE
CONTEXT OF ALZHEIMERS AND KY MEN
SHAH BUT A LOT OF THE ADVOCACY
PRINCIPLES CAN BE APPLIED ACROSS
ANY AREA. SO FIRST UP LET'S TALK
ABOUT THE APPROPRIATIONS
PROCESS.
THIS IS WHAT FUNDS THE
GOVERNMENT AND IN OUR CASE
SPECIFICALLY THE RESEARCH AT
NIH. I APOLOGIZE IF YOU HEAR
TRUCKS IN T BACK GRAB, APPEARS
TO BE A VERY BUSY CONSTRUCTION
DAY ON MY STREET.
WE WILL START WITH POLICY
PLATFORM THAT HAS PROVIDED A
FOUNDATION FOR ALL OF OUR
EFFORTS OVER THE PAST DECADE.
WHICH IS THE BIPARTISAN NATIONAL
ALZHEIMERS PROJECT ACT. NAPA WAS
THE TOP POLICY PRIORITY
ASSOCIATION AIM OVER A DECADE
AGO AND CONGRESS UNANIMOUSLY
PASSED THE BILL IN 2010.
MANDATED CREATION OF NATIONAL
STRATEGIC PLAN ON ALZHEIMERS
DISEASE SO BASICALLY LOOKING AT
WHAT WE ARE DOING AS A COUNTRY
TO ADDRESS ALZHEIMERS.
THE NATIONAL PLAN IS RELEASED BY
DEPARTMENT OF HEALTH AND HUMAN
SERVICES EACH YEAR, THE MOST
RECENT VERSION WAS RELEASED IN
DECEMBER SO JUST A FEW MONTHS
AGO.
A KEY GOAL OF THE NATIONAL PLAN
IS FIND WAY TO PREVENT
EFFECTIVELY TREAT ALZHEIMERS BY
2025, WHICH MEANS ALZHEIMERS
RESEARCH NEEDS TO BE A TOP
PRIORITY FOR THE COUNTRY.
SO THE GOAL OF THIS 2025 MARKER
OUTTHERE. HOW DO WE GET THERE?
HOW DO WE KNOW EXACTLY WHAT THE
SCIENTISTS NEED, HOW TO DRIVE
THAT. TO FIGURE THAT OUT WE
ADVOCATED FOR THE ALZHEIMERS
ACCOUNTABILITY ACT WHICH WE
REFER TO AS AAA, NO US IN THIS
PRESENTATION AS I'M SURE YOU SAW
IN THE SFN PRESENTATION, WE LIKE
TO USE A LOT OF ACRONYMS IN
WASHINGTON, SO TRIPLE A IS ONE.
TRIPLE A ENACTED IN 2014. IT
REQUIRES THE NIH TO SUBMIT AN
ANNUAL ALZHEIMERS BUDGET REQUEST
DIRECTLY TO CONGRESS AND THE
PRESIDENT. THIS PROFESSIONAL
JUDGMENT BUDGET OR BYPASS BUDGET
IS A GREAT OVERVIEW OF RESEARCH
NIH HAS BEEN ABLE TO FUND WITH
RECENT APPROPRIATIONS INCREASES
FROM CONGRESS. AND INCLUDES
AMOUNT OF MONEY SCIENTISTS
BELIEVE NEEDED IN ORDER TO MOVE
FORWARD TOWARDS THAT 2025 GOAL.
NIH DOES THIS FOR THREE DISEASE
AREA, HIV AIDS, CANCER, AND
ALZHEIMERS, THIS BYPASS BUDGET
IS INC ABLY HELPFUL IN MAKING OR
CASE.
COPING INCREASED FEDERAL
RESEARCH FUNDING MORE THAN SEVEN
FOLD SINCE NAPA ENACTED A DECADE
AGO. THIS CHART CONTINUES TO BE
A FAVORITE BECAUSE YEAR AFTER
YEAR, WE KEEP SAYING THAT
PROGRESS. INCLUDING THE MOST
RECENT $289 MILLION INCREASE IN
FISCAL YEAR 2022. AND THAT WAS
THANKS TO THE TIRELESS WORK OF
ADVOCATES ACROSS THE COUNTRY. AS
YOU CAN SEE FROM THIS SLIDE,
ADVOCACY HELPS TOP OF MIND FOR
CONGRESS, THERE ARE OTHER ISSUES
AN PRIORITIES COMPETING FOR
THEIR ATTENTION. THIS MEANS
TOTAL FUNDING FOR ALZHEIMERS
RESEARCH AT NIH IS NEARLY
3.5 BILLION. YOU CAN SEE IN 2015
WE WERE AT 631 MILLION SO WE
MADE HUGE STRIDES. WE JUST
WRAPPED UP THE FY 22 PROCESS AND
THAT WILL BE PIVOTING TO FY 23.
THAT IS A RESEARCH FUNDING
REQUEST. THE OTHER IMPORTANT
FUNDING REQUEST WE DO IS RELATED
TO THE BOLD INFRASTRUCTURE FOR
ALZHEIMERS ACT OR THE BUILDING
OUR LARGEST DEMENTIA
INFRASTRUCTURE FOR ALZHEIMERS
ACT. AND THE PUBLIC HEALTH
ACTIONS THAT ARE ESSENTIAL TO
ADDRESSING ALZHEIMERS ACROSS THE
COUNTRY. BOLD WAS TOP PRIORITIES
ENACTED IN 2018 AND AUTHORIZED
100 MILLION OVER FIVE YEARS FOR
THE CDC TO BUILD A ROBUST
ALZHEIMERS PUBLIC HEALTH
INFRASTRUCTURE ACROSS THE
COUNTRY.
THE INFRASTRUCTURE INCLUDES
THREE BUCKETS PUBLIC HEALTH
CENTERS OF EXCELLENCE, FUNDING
TO STATE LOCAL AND TRIBAL PUBLIC
HEALTH DEPARTMENTS AND FOCUS
ONEN CREASING DATA ANALYSIS AND
TIMELY REPORTING.
THESE ACTIONS WILL FOCUS ON
IMPORTANT ALZHEIMERS PUBLIC
HEALTH PRIORITIES LIKE
INCREASING EARLY DETECTION AND
DIAGNOSIS, REDUCING RISK,
MEETING THE NEEDS OF CAREGIVERS,
ADDRESSING SOCIAL DETERMINANTS
OF HEALTH. CONGRESS APPROPRIATED
10 MILLION THE FIRST YEAR OF
BOLD PLE IMPLEMENTATION IN FISCAL
YEAR 2020 TO AWARD FUNDING TO
THREE PUBLIC HEALTH CENTERS OF
EXCELLENCE INCLUDING ONE RUN BY
THE ASSOCIATION ON RISK
REDUCTION AND 16 PUBLIC HEALTH
DEPARTMENTS ACROSS THE COUNTRY.
CONGRESS APPROPRIATED 15 MILLION
FOR BOLD FISCAL YEAR 2021 WHICH
LED TO THE FUNDING OF 23 TOTAL
PUBLIC HEALTH DEPARTMENTS ACROSS
THE COUNTRY. THIS YEAR CONGRESS
APPROPRIATED 25 MILLION FOR BOLD
FY 22. THIS WILL ALLOW CDC AWARD
ADDITIONAL GRANTS TO PUBLIC
HEALTH DEPARTMENTS ACROSS THE
COUNTRY. WE WILL BE MAKING
ADDITIONAL REQUESTS IN THE FQ 23
-- FY 23. THE WAY WE HAVE OUR
ADVOCATES MAKE THESE REQUESTS IS
EVERY YEAR DURING APPROPRIATION
SEASON TYPICALLY RIGHT NOW IN
MARCH IS WHEN THE HOUSE IS
GEARING UP FOR APPROPRIATIONS,
WE WILL ACTIVATE OUR ADVOCATES
TO MAKE THE FUNDING REQUESTS TO
THEIR MEMBERS OF CONGRESS.
FOR THIS YEAR REQUEST WAS
ADDITIONAL 289 MILLION FOR NIH
RESEARCH ACTIVITIES, ON
ALZHEIMERS AND DEMENTIA. AND 20
MILLION FOR BOTH. SO YOU WILL
SEE US QUICKLY THE NEXT WEEK OR
SO RELEASING FY 23 NUMBERS, AND
THEN WE WILL BE ACTIVATING OUR
ADVOCATES TO STATABLING TO
MEMBERS OF CONGRESS ABOUT THE FY
23 REQUEST. APPROPRIATIONS
PROCESS IS A VERY LONG PROCESS,
SOMETIMES SIX MONTH PAST WHEN
APPROPRIATIONS ARE SUPPOSED TO
BE DONE. BUT IT WAS ONE YOU
THINK COULDN'T ON EVERY YEAR. SO
NOW PIVOT AWAY FROM
APPROPRIATIONS INTO OUR
AUTHORIZING LEGISLATION OUR
PRIORITY LEGISLATION. ONE TOP
PRIORITY IS ENACT ACT, ANOTHER
ACRONYM THE EQUITY NEUROSCIENCE
ALZHEIMERS CLINICAL TRIALS ACT,
AND THIS INCREASE PARTICIPATION
OF UNDER-REPRESENTED
POPULATIONS, AND ALZHEIMERS AND
OTHER DI MANE SHAH CLINICAL
TRIALS. BEFORE WE GET INTO THE
BILL SPECIFICS, I WANTED TO GIVE
A BRIEF OVERVIEW WHERE THINGS
STAND TODAY AND WHY WE BELIEVE
THIS BILL IS NEEDED. SO I WANT
TO START WITH A GREAT WORK THAT
THE NATIONAL INSTITUTE ON AGING
HAS DONE.
AS MOST OF YOU MAY KNOW NIA IS
DIVISION WITHIN THE NATIONAL
INSTITUTES OF HEALTH WHICH HAS
JURISDICTION OVER THE MAJORITY
OF HAMMERERS VERGE EFFORTS. NIA
ESTABLISHED A GOOD FOUNDATION OF
CENTERS ACROSS THE COUNTRY
OFFERING LOCAL RESOURCES SUPPORT
AND OPPORTUNITIES TO PARTICIPATE
IN ALZHEIMERS AND OTHER DEMENTIA
RESEARCH. NIA FUNDS OVER 30
ALZHEIMERS DISEASE RESEARCH
SENTENCERS FOR ADRCs AT MAJOR
MEDICAL INSTITUTIONS ACROSS THE
COUNTRY. THAT ARE DESIGNED TO
EXPAND AND DIVERSIFY RESEARCH
AND EDUCATION OPPORTUNITIES.
THERE ARE ALSO EIGHT ALZHEIMERS
FOCUS RESOURCE CENTERS FOR
MINORITY AGING RESEARCH, WHICH
FOCUS ON ENHANCING THE DIVERSITY
OF AGING RESEARCH OF THE AGING
RESEARCH WORK FORCE, THAT WAS
HARD TO SAY, MENTORING PROMISING
SCIENTISTS FROM
UNDER-REPRESENTED GROUPS. THESE
ADRCs ARE WELL-POSITIONED TO
INCREASE EDUCATION OUTREACH
ACTIVITIES TO UNDER-REPRESENTED
POPULATIONS WITHIN THEIR
COMMUNITIES.
NIA HAS RELEASED A NATIONAL
STRATEGY FOR RECRUITMENT AND
PARTICIPATION IN ALZHEIMERS AND
RELATED DEMENTIA CLINICAL
RESEARCH THE ALZHEIMERS
ASSOCIATION HELPED FACILITATE
AND OUTLINES APPROACHES TO HELP
STUDY SITES AND RESEARCHERS
RECRUIT AND RETAIN ADEQUATE
NUMBERS OF DIVERSE VOLUNTEERS
FOR ALZHEIMERS AND OTHER
DEMENTIA CLINICAL TRIALS. THOSE
RECOMMENDATIONS FOCUS ON
STRATEGIES INCREASING AWARENESS
AND ENGAGEMENT ENGAGING LOCAL
COMMUNITIES AND DEVELOPING AN
APPLIED SCIENCE RECRUITMENT. IN
ADDITION, TO THE GREAT WORK THAT
NIA HAS DONE WE AT ALZHEIMERS
ASSOCIATION HAVE MADE INCREASING
THE PARTICIPATION OF
UNDER-REPRESENTED POPULATIONS IN
CLINICAL TRIALS PRIORITY IN OUR
RESEARCH AND ENGAGEMENT EFFORTS.
ONE SPECIFIC EXAMPLE OF WORK TO
DIVERSIFY TRIAL PARTICIPANTS IS
U.S. POINTER STUDY. U.S. POINTER
SITES WERE SELECTED IN PART
BASED ON HISTORY OF ENGAGEMENT
AND REACH INTO THEIR
COMMUNITIES.
THE ALZHEIMERS ASSOCIATION
CONSIDERS FACTORS OF COMMUNITY
NETWORKS FROM THE CLINICAL
ASSOCIATION TEAMS, WE HAVE MADE
IT A PRORE YOU FOR TO DEVELOP A
GRASSROOTS STRATEGY FOR
COMMUNITY BASED ENGAGEMENT AND
RECRUITMENT WITHIN THE
COMMUNITY. THIS BUILDS UPON
NETWORKS THAT LINK COMMUNITY
BASED ORGANIZATIONS, COMMUNITY
LEADERS AND CLINICAL TRIAL
RESEARCH TEAMS.
SO THE IDEAL HERE IS REALLY TO
GO WHERE THE HELP CONVERSATIONS
ARE ALREADY HAPPENING. SO FAR
THESE STRATEGIES HAVE BEEN
SUCCESSFUL. IN ENROLLING OVER
25% OF PARTICIPANTS IN POINTER
FROM UNDER-REPRESENTED
POPULATIONS.
IN ADDITION THE NEW IDEA STUDY
AIMS TO BE AMONG THE MOST
RACIALLY ETHNICALLY DIVERSE AL
HAMMERERS STUDY EVERY LAUNCHED.
AT LEAST 4,000 PLAN 7,000 NEW
IDEAS PARTICIPANTS WILL BE BLACK
AND AFRICAN AMERICAN, AND
HISPANIC LATINO POPULATIONS
HISTORICALLY UNDER-REPRESENTED
IN DEMENTIA RESEARCH. DESPITE
ALL THIS GREAT WORK, MUCH MORE
NEEDS TO BE DONE IN THIS AREA.
WE KNOW ALZHEIMERS AND OTHER
DEMENTIA DISPROPORTIONATELY
AFFECT OLDER BLACK HISPANIC
AMERICANS THAN OLDER WHITES AND
IN FACT BLACK AMERICANS ARE
TWICE AS LIKELY TO DEVELOP
ALZHEIMER AND HISPANIC AND
AFRICAN AMERICANS ARE MORE THAN
TWICE AS LIKELY.
UNDER-REPRESENTED POPULATIONS TO
BE REPRESENTATIVE OF THE UNITED
STATES.
THE UNDERREPRESENTATION OF THESE
GROUPS NOT ONLY HINDERS THE
ABILITY OF RESEARCHERS TO
UNDERSTAND THE HEALTH
DISPARITIES BUT IT ALSO
RESTRICTS THEIR KNOWLEDGE OF HOW
APPROVED THERAPY OR DIAGNOSTIC
MAY EFFECT THE POPULATION MOST
LIKELY TO NEED THE DRUG. SO
THERE IS CLEARLY A NEED FOR
CURRENT FUTURE RESEARCH TO
INCLUDE MORE DIVERSE ENROLLMENT
TO ENSURE EVERYONE BENEFITS FROM
ADVANCES IN ALZHEIMER SCIENCE.
HOW ARE WE GOING TO DO THAT?
HOW DO WE MAKE THAT HAPPEN?
BUILDING OFF FOUNDATION THAT NIA
ESTABLISHED, TAKING THE
KNOWLEDGE THAT WE HAVE GLEANED
FROM OUR OWN EFFORTS AT THE
ASSOCIATION, CONSULTING WITH
EXPERTS IN THE FIELD AND WORKING
WITH CONGRESSIONAL CHAMPIONS WE
CRAFTED THE ENACT ACT. WITH ALL
OUR BILLS WE TOOK TIME TO
COLLABORATE INTERNALLY AND
EXTERNALLY TO GET INPUT ON WHAT
PROVISIONS WOULD MAKE A
MEANINGFUL IMPACT AND HELP
ADDRESS PROBLEM ACROSS THE
COUNTRY. WE ARE ALSO VERY
FORTUNATE THAT DR. CARL HILL WHO
IS THE ALZHEIMERS ASSOCIATION
CHIEF DIVERSITY EQUITY AND
INCLUSION OFFICER, USED TO BE
THE DIRECTOR OF NIA OFFICE OF
SPECIAL POPULATIONS. WHERE HE
LED DEVELOPMENT OF THE NIA
HEALTH DISPARITIES RESEARCH
FRAMEWORK. SO HIS EXPERTISE WAS
INSTRUMENTAL IN DEVELOPING THIS
PROPOSAL. THE ENACT ACT FOCUSES
ON THREE ASPECTS OF DIVERSIFYING
ALZHEIMERS AND OTHER CLINICAL
TRIAL ENROLLMENT, FOCUS ON
EXPANDING EDUCATION AND OUTREACH
TO THESE POPULATION, ENCOURAGING
THE DIVERSITY OF CLINICAL TRIALS
STAFF, AND REDUCING
PARTICIPATION BURDEN.
IMPORTANTLY, THIS BILL
AUTHORIZES $60 MILLION EACH YEAR
FOR FIVE YEARS TO CARRY OUT
THESE ACTIVITIES.
SO I WILL GO A LITTLE BIT DEEPER
ON THE MAIN PILLARS OF THIS
BILL. THE FIRST IS TO EXPAND
ACCESS AND INCREASE OUTREACH AND
EDUCATION TO UNDER-REPRESENTED
POPULATIONS. IT IS REALLY
BUILDING TRUST AND AWARENESS IN
THESE COMMUNITIES, IT MEANS
EXPANDING THE NUMBER OF ADRCs,
IT MEANS INCREASING EDUCATION
AND OUTREACH ACTIVITIES FROM
ADRC AND RICMAR WHO WOULD USE
COMMUNITY BASED ENGAGEMENT
STRATEGIES IN REACHING OUT TO
THE UNDER-REPRESENTED
POPULATIONS.
THE NEXT PILLAR IS TO ENHANCE
THE DIVERSITY OF PRINCIPLE
INVESTIGATORS AND STUDY STAFF,
THIS MEANS THAT NIA ENCOURAGE
GREATER DIVERSITY AMONG PIs
AND CLINICAL TRIALS STUDY STAFF.
SO THE RESEARCHERS RUNNING THE
TRIALS ARE MORE REPRESENTATIVE
OF THE POPULATIONS THAT THEY ARE
TARGETING FOR ENROLLMENT.
FINALLY, THE LAST MAIN PILLAR TO
US CONSIST ON STRATEGIES TO
REDUCE PARTICIPATION BURDEN.
THIS MEANS INCREASING THE NUMBER
OF ALZHEIMERS CLINICAL TRIALS
SITES IN AREAS WITH HIGH
CONCENTRATIONS OF
UNDER-REPRESENTED POPULATIONS,
TO MAKE IT EASIER FOR THESE
POPULATIONS TO ENROLL AND
PARTICIPATE BRINGING THE TRIAL
INTO THE COMMUNITY. AND
ENCOURAGING USE OF REMOTE HELP
TECHNOLOGIES LIKE REMOTE PATIENT
MONITORING TO REDUCE
PARTICIPATION BURDEN. SO THAT'S
THE SUBSTANCE OF THE BILL, I CAN
TALK LONGER GET WONKIER ON THE
DETAILS OF THE BILL BUT I WANT
TO TELL YOU A LITTLE BIT ABOUT
THE STRATEGY IN REACHING OUT TO
MEMBERS OF CONGRESS TO LEAD ON
THIS BILL. IT IS GOING TO BE IN
THE JURISDICTION TWO COMMITTEES
THE ENERGY COMMERCE COMMITTEE
AND SENATE HELP COMMITTEE AND SO
AS WE WERE LOOKING FOR SPONSORS
OF THIS BILL, WE ARE FOCUSED IN
ON THOSE TWO COMMITTEES BECAUSE
THAT'S HOW THE BILLS MOVE
THROUGH CONGRESS. ADDITIONALLY
BECAUSE THIS BILL INCLUDES
FUNDING AMOUNT WE WERE ALSO
PAYING ATTENTION TO THE IDEA OF
APPROPRIATIONS COMMITTEE AND HOW
IMPORTANT THEY WOULD BE IN THE
ENACTMENT IMPLEMENTATION OF THIS
LEGISLATION.
OUR LEAD SENATE DEMOCRAT THE
SENATOR LUJAN OF MEXICO. MEMBER
OF THE SENATE HELP EDUCATION
LABOR COMMITTEE, THIS COMMITTEE
HAS NO JURISDICTION OVER AND
OUT. OUR LEAD REPUBLICAN SENATOR
SUSAN COLLINS AND FOR ANYBODY
THAT HAS BEEN INVOLVED IN
ALZHEIMERS POLICY ALL YOU KNOW
THAT SENATOR COLLINS IS ONE O
OUR LONG TIME CHAMPIONS, AND
SHE'S LED MANY OF OUR PREVIOUS
BILLS INCLUDING THE BOLD
INFRASTRUCTURE FOR ALZHEIMERS
ACT.
SHE IS ALSO CO-CHAIR OF THE
ALZHEIMERS TASK FORCE AND MEMBER
OF THE HELP COMMITTEE AND
RANKING MEMBER -- THE RANKING
MEMBER OF ITS PRIMARY HELP
SUBCOMMITTEE WHICH IS WHERE THE
BILL WILL GO THROUGH. ON THE
HOUSE SIDE, WE ARE WORKING WITH
A COUPLE OF NEW FOLKS THIS YEAR,
NEW TO US FOLKS, BUT AGAIN
LOOKING AT ENERGY AND COMMERCE
AND THE APPROPRIATIONS COMMITTEE
SO IT IS LED BY REPRESENTATIVE
LISA ROCHESTER FROM DELAWARE,
SHE IS ON ENERGY COMMERCE
COMMITTEE AND SITS ON THE HEALTH
SUBCOMMITTEE. WE ALSO HAVE
REPRESENTATIVE JAMIE BUTLER FROM
WASHINGTON STATE, SHE IS ON THE
APPROPRIATIONS COMMITTEE. WE ARE
ALSO JOINED BY JOHN CURTIS FROM
UTAH WHO IS CONGRESSWOMAN
ROCHESTER COLLEAGUE ON THE
REPUBLICAN SIDE OF THE ENERGY
COMMERCE SUBCOMMITTEE, AND THEN
WE HAVE CHRIS SMITH AND MAXINE
WATERS OF THE ALZHEIMERS TASK
FORCE. ALONG WITH ENACT GAINING
SUPPORT IN CONGRESS FROM 74
CO-SPONSORS IN THE HOUSE AND TEN
IN THE SENATE SO FAR, WE SEE
ORGANIZATION SUPPORT THIS
IMPORTANT BILL. IT IS IMPORTANT
FOR US THAT WE WORK WITH OTHER
STAKEHOLDERS AS WE DEVELOP
LEGISLATION.
I'M GOING TO QUICKLY GO THROUGH
ANOTHER PRIORITY THAT WE HAVE.
THIS IS SORT OF ANOTHER WAY WE
TACKLE ISSUES IMPORTANT TO THE
DEMENTIA COMMUNITY AND THAT'S
THROUGH IMPROVING CARE.
COMPREHENSIVE CARE FOR
ALZHEIMERS ACT AS CENTER FOR
MEDICARE MEDICAID INNOVATION
WHICH IS UNDER CMS, WHICH
CONTROLS MEDICARE, TO TEST
DEMENTIA CARE MANAGEMENT MODEL
TO IMPLEMENT COMPREHENSIVE CARE
SERVICES FOR DEMENTIA. THIS IS
JUST A SAMPLE AND NON-EXHAUSTIVE
LIST OF SOME OF THE SERVICES
PEOPLE LIVING WITH DEMENTIA USE
AND NEED. A LOT OF THESE
FAMILIAR TO YOU, SOME MEDICAL,
SOCIAL, CAREGIVER RELATED AND SO
ON.
THIS IS THE SAME LIST OF
SERVICES, BUT WITH THOSE COVERED
BY MEDICARE IN PURPLE. WAY THE
CURRENT MEDICARE SYSTEM WORKS IS
THROUGH A FEE FOR SERVICE OR ALA
CART SYSTEM WHERE CLINICIAN
FILLS SERVICES PROVIDE.
SINCE EACH SERVICE IS PAID
SEPARATELY, IT CAN BE HARD FOR
CLINICIAN OR GROUP TO DELIVER
THOSE SERVICES, THAT ARE COVERED
IN A COMPREHENSIVE OR
COORDINATED WAY. OF COURSE THEY
CAN'T BILL FOR SERVICES NOT
COVERED. SO WE ARE LOOKING TO
CHANGE THAT SYSTEM AND THIS MAZE
IS WHY. CURRENT DEMENTIA CARE IN
FEE FOR SERVICE WORLD RESULTS IN
FRAGMENTED CARE FOR PERSONS WITH
DEMENTIA AND CAREGIVERS AN
INCOMPLETE PATCH WORK OF
REIMBURSEMENT FOR CLINICIANS.
NO ONE'S NEEDS ARE BEING MET. WE
CAN CONVENE AD WORK GROUP TO
FIGURE HOW WE CAN BUILD OFF
DEMENTIA CARE MANAGEMENT MODELS
THAT ARE CURRENTLY BEING USED
PAT PLACES LIKE UCLA, INDIANA
UNIVERSITY, UCSF. TO CREATE ONE
THAT COULD BE SCALED UP AND BE
SOMETHING THAT WOULD WORK FOR
ALL PLACES LARGE PHYSICIAN
PRACTICE,, SMALL PRACTICES RURAL
PRACTICES HEALTH SYSTEMS. THE
WORK GROUP FIGURED OUT KEY
ELEMENTS AND SERVICES THAT ARE
NEEDED FOR DEMENTIA CARE
MANAGEMENT MODEL TO PROVIDE
QUALITY CARE AN REIMBURSEMENT.
SO THESE ARE THE KEY ELEMENTS
AND SERVICES. I WANT TO ALSO
TOUCH ON STRATEGY BEHIND THIS
BILL WE PUT TOGETHER THIS
FRAMEWORK AND WE TOOK THIS
FRAMEWORK BROUGHT IT TO CMMI. WE
LOOK -- WE INTRODUCE PRIORITYS
WE LOOK AT THIS FROM BOTH
ADMINISTRATIVE AND CONGRESSIONAL
VIEW TO TRY TO FIGURE HOW BEST
TO GET OUR WORK DONE.
AND SO WE TOOK FRAMEWORK TO CMMI
AND HAD A LOT OF REALLY GREAT
DISCUSSIONS WITH THEM OVER THE
LAST FEW YEARS.
PROVIDING WITH ANALYSIS AND
OPTIONS TO INCORPORATE THE MODEL
INTO ALREADY EXISTING PAYMENT
MODELS, OR AS STAND ALONE MODEL.
WE ARE CONTINUING OUR ENGAGEMENT
OF THEM. AT THE SAME TIME WE ARE
LOOKING TO CONGRESS FOR THEIR
LEADERSHIP. SHOWING A STRONG
SUPPORT FOR THIS MODEL FROM
CONGRESS THROUGH CO-SPONSORS
THROUGH CONGRESS MOVING THE
BILL, CMMI WILL BE ABLE TO SEE
THAT INTEREST LEVEL AND WORK IT
INTO THEIR PRIORITY. SO SIMILAR
TO ENACT WE WERE STRATEGIC IN
HOW WE DID OUTREACH FOR BILL
SPONSORS. HERE LEAD SPONSORS OF
THE BILL FROM MICHIGAN AND
SHELLEY ON WEST VIRGINIA FROM
THENATE, THEY HAVE BEEN BOTH
BEEN LONG TIME CHAMPIONS LEADING
ON IMPROVING HOPE FOR ALZHEIMERS
ACT A PRIORITY LAST YEAR.
SENATE STORE STABENOW IS ON THE
FINANCE COMMITTEE WHICH HAS
JURISDICTION OVER THE BILL AND
SENATOR CAPITO IS ON THE
APPROPRIATIONS COMMITTEE. IN THE
HOUSE THE BILL HAS JOINT
JURISDICTION IN WAYS AN MEANS
COMMITTEE AND THE ENERGY
COMMERCE COMMITTEE. SO WE
SELECTED MEMBERS FROM BOTH
COMMITTEES, TO LEAD THIS BILL
FOR US.
SO FROM WAYS AND MEANS WE HAVE
BRIAN HIGGINS FROM NEW YORK AND
DARIN LA HOOD FROM ILLINOIS. WE
HAVE PAUL TONKO NEW YORK AND
BRETT GUTHRIE FROM KENTUCKY.
NOTICE A PATTERN HERE WE WORK IN
BIPARTISAN AND BICAMERA WAY SO
WHEN INTRODUCING LEGISLATION, WE
ARE LOOKING FOR A STRATEGY OF
MOVING FORWARD, MOVING THE
LEGISLATION FORWARD.
ONE WAY TO DO THAT IS ATTACH
ANOTHER PIECE OF LEGISLATION
THAT MOVING AND WE HAVE DONE
THAT BEFORE WITH PREVIOUS
PRIORITY. THE OTHER OPTION IS
MOVE STAND ALONE BILL SO WE
CONTINUE TO HAVE THESE
CONVERSATIONS WITH THE BILL
SPONSORS AND COMMITTEE STAFF.
RIGHT NOW WE HAVE OVER 100
CO-SPONSORS IN THE HOUSE AND 24
CO-SPONSORS IN THE SENATE, OVER
LAST TEN MONTHS WE HAVE SEEN
GREAT SUPPORT FOR MEMBERS OF THE
CONGRESS, BUT WE HAVE ALSO HAD
ENDORSEMENT OF OVER 70 AGING
DEMENTIA ORGANIZATION, HEALTH
SYSTEMS AND PRACTICERS WHO SIGN
THEIR NAME THE A LETTER
ENDORSING THIS LEGISLATION, THE
GERONTO LOGICAL ASSOCIATION IN
AMERICA, THE MILKIN INSTITUTE,
ALLIANCE IMPROVE DEMENTIA CARE
AND LEWY BODY DEMENTIA
ASSOCIATION.
SO THIS IS A QUICK SUMMARY, THE
BILL ASKS CMMI DEMENTIA CARE
MANAGEMENT MODEL TO TEST
EFFECTIVENESS OF COMP HEN SUV
CARE MANAGEMENT SERVICES.
IT IS DESIGNED TO ETCH RADIOAS
MANY MEDICARE BENEFICIARIES AS
POSSIBLE AND ALSO INCLUDES A
LOOK INTO CMMI LOOKING AT
MEDICAID AND DUAL ELIGIBLE
BENEFICIARIES.
THERE IS A LITTLE ANIMATION.
THIS IS WHAT THE DEMENTIA CARE
THIS IS WHAT WE ENVISION THE
SYSTEM WOULD LOOK LIKE IF THE
DEMENTIA CARE MANAGEMENT MODEL
IS IMPLEMENTED, STREAMLINE
SERVICES. SORRY ABOUT THAT.
CLEARLY NOT VERY GOOD AT SHARING
MY SCREEN. SO I WANT TO VERY
QUICKLY TELL YOU A LITTLE BIT
HOW YOU CAN GET INVOLVED, ALL
IMPACT.ORG IS OUR ONE STOP SHOP.
THERE YOU CAN GET INFORMATION ON
OUR KEY ISSUES YOU CAN TAKE
ACTION ON A VARIETY OF TOPICS
APPROPRIATIONS ENACT
COMPREHENSIVE CARE, OTHER TIMELY
ISSUES, I THINK SIMILAR TO SFN
WE HAVE WHEN YOU CLICK ON IT AND
CLICK TAKE ACTION, IT HAS
PRE-WRITTEN EMAIL FOR YOU AND
SOCIAL MEDIA AND YOU JUST LINK
IT UP, IT WILL SEND THE NOTE TO
YOUR TWO SENATORS AND YOUR
MEMBER IN THE HOUSE OF
REPRESENTATIVES. IT IS NICE EASY
GREAT WAY TO FIRST BEGIN GETTING
ENGAGED. YOU CAN SIGN UP WITH
YOUR LOCAL CHAPTER WE HAVE
CHAPTERS IN ALL 50 STATES TO
BECOME AN ALZHEIMERS
CONGRESSIONAL TEAM MEMBER SO
THAT MEANS YOU ARE ASSIGNED TO A
MEMBER OF CONGRESS AND YOU CAN
MEET WITH THE MEMBER AND STAFF
COUPLE OF TIMES A YEAR BECOME
RESOURCE FOR THEM, USE SOCIAL
MEDIA TO ENGAGE WITH THEM AND I
BELIEVE THAT SUE WRONSKY WILL
TALK MORE ABOUT THAT IN THE NEXT
SESSION.
BUT OUR WEBSITE ALSO HAS OUR
FACT SHEETS INFO GRAPHICS,
BACKGROUND DOCUMENTS, WE RYE TO
MAKE AS EASY AS POSSIBLE.
ALEX, THAT IS ALL ON MY END..
>> THAT WAS EXCELLENT. THANK YOU
SO MUCH FOR THE DISCUSSION ON
AIMS PRIORITIES, THAT WAS REALLY
INSIGHTFUL. I'M ALSO CURIOUS TO
LEARN A LITTLE BIT MORE ABOUT
HOW ALZHEIMERS ASSOCIATION IS
ABLE TO CONVINCE LEGISLATURES TO
PRIORITIZE ALZHEIMERS DISEASE
ADVOCATE FOR FUNDING IN THIS
SPACE.
>> THAT IS A GREAT QUESTION. I
THINK ONE OF THE WAYS THAT ISN'T
NECESSARILY BECAUSE OF US, IS
BECAUSE SO MANY MEMBERS OF
CONGRESS ARE FEELING THIS WITHIN
THEIR OWN FAMILIES AND FRIEND
GROUPS RIGHT NOW. THAT ARE
REALLY IS A ISSUE OF INTEREST TO
THEM. THE BEST WAY THAT WE
CONVINCE MEMBERS TO PRIORITIZE
THIS IS THROUGH OUR ADVOCATES.
WE HAVE ADVOCATES WHO ARE LIVING
WITH DEMENTIA, WE HAVE ADVOCATES
WHO LOST SOMEBODY FROM -- THAT
WAS LIVING WITH DEMENTIA. WE
HAVE CAREGIVERS YOU HAVE
SCIENTISTS, WE HAVE GOT PEOPLE
IN THE FIELD, WE HAVE GOT NURSE,
WE HAVE GOT FOLKS THAT ARE
WORKING ON ASSISTIVE LIVING
FACILITIES, PEOPLE SHARING THEIR
STORIES AN HUMANIZING THE
STATISTICS AND HUMANIZING ALL
THE STORIES THAT YOU HEAR.
>> I COULDN'T SAY ENOUGH
POSITIVE THINGS ABOUT THE THE
CONGRESSIONAL TEAM AND WORKING
DIRECTLY WITH SUE, I'M SURE SHE
WILL COMMENT MORE ABOUT HER
EXPERIENCE LATER ON AS WELL. SO
NOW WE WILL OPEN THE FLOOR EPITO
QUESTIONS FROM THE AUDIENCE.
I THINK SRI HAD A QUESTION IF
YOU ARE HERE IF YOU WOULD LIKE
TO ASK YOUR QUESTION OTHERWISE I
CAN ASK IT.
>> HI, JEN. GREAT TALK FIRST,
VERY INFORMATIVE, LEARNED NEW
THINGS.
I LIKE YOU TALKED ABOUT THE IDEA
STUDY, I DON'T KNOW ALL DETAILS
SO PERHAPS WE CAN COLLECT
OFFLINE IF YOU HAVE A LETTER TO
SEND ME ABOUT THAT.
>> LOVE TO.
>> GREAT. COINCIDENTALLY
YESTERDAY I WAS APPROACHED BY A
START UP IN THE AI SPACE THAT'S
INTERESTED IN WORKING WITH
ALZHEIMERS. SO IT IS A GREAT
COINCIDENCE I MET WITH THEM,
TALKED TO THEM YESTERDAY, YOU
ARE ON THE CALL HERE TODAY. SO
THAT'S AIN HAVE ANY INTEREST IN
USING AI FOR EXAMPLE TO ACQUIRE
PRELIMINARY DATA OR RUN STUDIES
OR SOMETHING ALONG THOSE LINES?
>> ONE OF THE GREATEST THINGS I
THINK THE ASSOCIATION DOES IN
RESEARCH FIELD THAT WE HAVE BEEN
DOING WITH IDEA STUDY AND NEW
IDEAS WHICH IS OUR IDEAS 2.0, IS
THAT EVERY YEAR WE CONVENE
ALZHEIMERS ASSOCIATION
INTERNATIONAL CONFERENCE, THAT
USUALLY BRINGS IN DURING
PRE-COVID YEARS OVER 6,000
RESEARCHERS, OVER 90 COUNTRIES
ACROSS THE WORLD ABLE THE SHARE
THEIR RESEARCH. IN ADDITION TO
THE PRESENTATIONS WE HAVE HALL
FOR POSTER PRESENTATIONS WHERE
FOLKS CAN SUBMIT THEIR LATEST
RESEARCH AND WE HAVE AN
EXHIBITION HALL WHERE COMPANIES
CAN SHOW OFF NEW TECHNOLOGY. SO
IT IS A GREAT PLACE FOR
COMPANIES LIKE THE ONE YOU WERE
TALKING ABOUT TO ENGAGE WITH
RESEARCHERS WHO ARE FOCUSING ON
THE WIDE VARIETY OF RESEARCH
TOPICS MANY THE ALZHEIMERS AND
DEMENTIA SPACE.
>> ONE OF THE EARLY PREDICTORS O
COGNITIVE DECLINE IN AD IS
SPECIAL INVOLVEMENT IN --
AMYLOID IS A HUGE PROBLEM TIME
YOU ARE ABLE TO EMERGE IT IT IS
TOO LATE TO DO ANYTHING
MEANINGFUL. SO I WONDERED IN
YOUR PREVIOUS CONFERENCES THERE
WERE ANY AI TEAM PRESENTATIONS
OR PLENARY SESSIONS BECAUSE
THERE WAS NONE THAT WOULD BE
SOMETHING WE CAN DO TOGETHER AND
PUT TOGETHER BECAUSE I KNOW QUIT
A FEW PEOPLE IN THE AI SPACE.
>> I WOULD LOVE TO -- ON THAT.
>> PERFECT. THANK YOU.
>> THANK YOU.
>> THANK YOU, JEN FOR BEING HERE
AGAIN.
I THINK WE CAN TAKE A SHORT LIKE
TWO MINUTE BREAK AND THEN COME
BACK FOR THE LAST DISCUSSION.
THANK YOU.
>>THIS NEXT SESSION IS A
PANEL DISCUSSION. FROM THE
SOCIETY FOR NEUROSCIENCE FOR THE
SESSION WE HAVE DR. LORI
MCMAHON, KATIE GRADY AND CATH
RIP BLOOM. FROM RESEARCH AMERICA
WE ARE JOINED BY DR. SOPHIA
KASKA AND SUE REPRESENTS THE
ALZHEIMERS ASSOCIATION, AND
THERE COLLEY AND JENNIFER BROWN
WILL SPEAK ON BEHALF OF THE
NATIONAL SCIENCE POLICY NETWORK.
I WILL ASK EACH PANELIST IF YOU
CAN INTRODUCE YOURSELF AND SHARE
A LITTLE BIT ABOUT YOUR
BACKGROUND AND HOW YOU GOT
INVOLVED IN YOUR RESPECTIVE
ORGANIZATION, THAT WOULD BE
GREAT.
>> SO I CAN GO FIRST. SO I'M
LORI MCMAHON, VICE PRESIDENT FOR
RESEARCH AT THE MEDICAL
UNIVERSITY OF SOUTH CAROLINA, I
STARTED IN THIS ROLE NOVEMBER 1,
2021, PRIOR TO THAT I SPENT MY
CAREER AT UNIVERSITY OF ALABAMA
AT BIRMINGHAM, I'M A
NEUROSCIENCE PROFESSOR, I SERVED
AS DEAN OF GRADUATE SCHOOL AT
UAB AS WELL SO EDUCATION AND
RESEARCH TO ME ARE SO TIED
TOGETHER THEY CAN'T REALLY BE
SEPARATED SO MY PASSION ABOUT
GROWING THE NEXT GENERATION AND
DOING NOVEL WORK AND MAKING
DISCOVERIES AS A GREAT PASSION
OF MINE AND ORIGINALLY FROM
SOUTHERN ILLINOIS, I'M MOTHER OF
THREE SONS AND TWO STEPSONS, MY
HUSBAND IS ALSO SCIENTIST NOT A
NEUROSCIENTIST BUT HE HAS A
SMALL BIOTECH COMPANY. SO THAT
IS A LITTLE BIT ABOUT ME.
>> I'LL GO NEXT IF IT WORKS.. I
HAVE TO START BY SAYING I FEEL
LIKE THE BIGGEST IMPOSTER IN THE
ROOM BECAUSE I AM ABSOLUTELY NOT
A SCIENTIST. I'M ABSOLUTELY NOT
A PUBLIC POLICY PROFESSIONAL I'M
A WIFE, I'M A MOM, GRANDMOTHER
OF TWO WONDERFUL GRAND KIDS, I'M
A RUNNER, I'M A NEWS JUNKY, I'M
A READER, MOST IMPORTANTLY TO
THIS CONVERSATION I'M AND
ADVOCATE, ON BEHALF OF THE
ALZHEIMERS ASSOCIATION BACK IN
2004. MY MOM WAS DIAGNOSED, SHE
WAS 63, I WAS 28 WITH THREE
YOUNG KIDS. WE LOST OUT ON QUITE
A BIT OF MY MOM'S ADULT LIFE BUT
I BECAME ADVOCATE BECAUSE I KNEW
WHAT IT MEANT TO BE A CAREGIVER
AND DAUGHTER OF SOMEONE WHO HAD
ALZHEIMERS DISEASE PLAIN AND
SIMPLE. I HAD THE OPPORTUNITY
BECAUSE OF MY ADVOCACY TO HAVE
SOME REALLY MEANINGFUL IMPORTANT
CONVERSATIONS WITH MY ELECTED
REPRESENTATIVES. AND I THINK
THAT IS THE BASIS OF ADVOCACY
FOR ANY GROUP INTERESTED IN
DOING IT. I WOULD P WE GET THE
CHANCE, I WOULD LIKE TO TALK A
LITTLE BIT ABOUT THE IMPORTANCE
OF SCIENTISTS BEING MT. ROOM,
WHEN ADVOCACY IS NEEDED, IN THE
MEANTIME THAT IS MY QUICK
OVERVIEW AND I'M SO HONORED THAT
IS A BAND ALEX INVITED ME TO BE
HERE WITH Y'ALL TODAY.
>> THANKS SO MUCH, SOPHIA, WOULD
YOU LIKE TO GO NEXT?
>> SURE, SANCTION, SAHBA, HI
EVERYONE, MY NAME IS SOPHIA
KASKA AND I'M MANAGER OF SCIENCE
INITIATIVES AN OUTREACH AT
RESEARCH AMERICA. RESEARCH
AMERICA IS A MEDICAL AND HEALTH
ADVOCACY NON-PROFIT
ORGANIZATION. SO AT MY ROLE AT
RESEARCH AMERICA ONE OF THE
THINGS I DO IS OVERSEE SPECIFIC
MICROGRANT PROGRAM WHICH PROVIDE
PROGRAM FINANCIAL SUPPORT TO
SCIENCE POLICY GROUPS BY
GRADUATE STUDENTS POST DOCS MED
STUDENTS EARLY CAREER SCIENTISTS
ALL OVER THE COUNTRY. ALSO SERVE
ON THE SCIENCE POLICY COMMITTEE
FOR MY PROFESSIONAL SOCIETY
WHICH IS THE AMERICAN SOCIETY
FOR PHARMACOLOGY. AND
EXPERIMENTAL THERAPEUTICS AND
IING ARELY SERVE AS A GUIDE FOR
OUR WASHINGTON FELLOWS PROGRAM,
I'M A NEUROPHARMACOLOGIST BY
TRAINING, I EARNED A DUAL MAJOR
Ph.D. AND PHARMACOLOGY AND
TOXICOLOGY AND ENVIRONMENTAL
TOXICOLOGY AT MICHIGAN STATE
UNIVERSITY AND DID POST-DOCTORAL
RESEARCH IN PHARMACEUTICAL
SCIENCES AT THE UNIVERSITY OF
KENTUCKY. I'M PASSIONATE ABOUT
SUPPORTING EARLY CAREER
SCIENTISTS AND THEIR ENDEAVORS
IN PURSUING POLICY AND ADVOCACY
WORK. IT IS REALLY KIND OF
AMAZING THAT I'M IN THIS ROLE AT
RESEARCH AMERICA WHERE I CAN DO
THAT.
>> DR. SRI WOULD YOU LAKE TO GO
NEXT?
>> YES. MY STORY STARTED ABOUT
28 YEARS AGO. I'M A FIRST
GENERATION IMMIGRANT FROM MY
FAMILY, I HAVE BEEN SAN ANTONIO
AT HEALTH SCIENCE CENTER IN 1997
FOR NEURORADIOLOGY FELLOWSHIP
AND PLAN WAS TO COMPLETE THE
FELLOWSHIP AND GO BACK TO
INSTITUTION IN MY COUNTRY, THAT
WAS RECRUITING A CHIEF OF
NEURORADIOLOGY, THAT'S ALL I
WANTED TO DO, THERE WERE NO
PLANS TO STAY BACK, I JUST
WANTED TO GET THAT ADDITIONAL
TRAINING GET THAT NETWORK
CONTEXT AND GO BACK BUT ONE
THING LED TO ANOTHER AND WITHIN
A FEW MONTHS OF MY ARRIVING MY
WIFE WHO ALSO IS A PHYSICIAN
SHOWED UP AGAINST MY WISHES OF
COURSE.. SO HERE REWITH 27, 28
YEARS LATER. AFTER MY STINT AT
SCIENCE CENTER SAN ANTONIO I
MOVED THE M.D. ANDERSON CANCER
CENTER IN HOUSTON BECAUSE I HAD
A FAMILY MEMBER WHO PREVIOUSLY
DIED OF CERVICAL CANCER. SO
ONCOLOGY WAS ALWAYS FOCUS FOR
ME. SO WITH MY BACKGROUND IN
FUNCTIONAL MRA COGNITIVE
NEUROSCIENCE AND NEUROONCOLOGY,
IT WAS FANTASTIC TO BE WORKING
AT ONE OF THE PREMIER
INSTITUTIONS IN THE WORLD Z LIFE
WAS GOING REALLY WELL UNTIL I
HIRED A FAMILY SET BACK THAT
THAT CAUSED ME TO TAKE SOME TIME
OFF AND DECIDE THE OTHER
IMPORTANT THINGS IN MY LIFE THAT
I WANTED TO DO. THAT GAVE ME
PERSPECTIVE BECAUSE I WAS ABLE
TO UNDERSTAND I DIDN'T
NECESSARILY CONTRIBUTE AS A
PHYSICIAN OR SCIENTIST, THERE
WERE OTHER DOMAIN THAT I COULD
BE MAKE POTENTIALLY MORE
MEANINGFUL CONTRIBUTIONS THAN AT
THE BEDSIDE OR IN RESEARCH.
FIRST INVOLVEMENT THERE WAS
ACTUALLY GLOBAL HEALTH WITH
GLOBAL HEALTH CONSORTIUM IN
WASHINGTON. THE LARGEST GLOBAL
HEALTH CONSORTIUM IN THE WORLD.
IT'S GOT 33,000 MEMBERS AND OVER
ABOUT 200 INSTITUTIONS. AND WITH
THEM I HAVE BEEN INVOLVED IN
ADVOCACY EDUCATION RESEARCH AND
SERVICE OVER THE LAST THREE OR
FOUR YEARS, WHEN I JOINED THEM
OF COURSE NOBODY KNEW THAT
GLOBAL HEALTH WAS THIS
IMPORTANT. BUT NOW PEOPLE COME
BACK AND TELL ME THAT I HAD THE
VISION TO GET INTO IT. BUT
THAT'S NOT TRUE. SO I WANT TO
COME FROM THAT. THE NATURAL
EXTENSION OF THAT THEN BE GIVEN
ALL MY INTEREST IN READING
WRITING ANALYSIS AND RESEARCH
WAS TO GET INTO SCIENCE AND
TECHNOLOGY POLICY. BECAUSE ONE
OF THE AREAS I'M DEEPLY
INTERESTED IN IS AI. EMERGING
TECHNOLOGY AND A LOT OF
RAMIFICATIONS IN HEALTHCARE SO
IT MADE SENSE FOR ME TO GET INTO
SCIENCE AND TECHNOLOGY POLICY,
THAT'S HOW INVOLVEMENT WITH NSPN
WENT. IT HAS YOUNG PEOPLE SO I'M
A GOLDING OLDY THERE BUT I
SOMEHOW MANAGED TO FIT IN DOING
THIS PRESENTATION TWO YOUNG
PEOPLE ON THIS CALL. NSPN
INVOLVEMENT IS ALSO BROADENED
SOME OF THE HORIZONS, IN TERMS
OF MY WORK WITH CONGRESS FOR
EXAMPLE IN TERMS OF ADVOCACY.
AND OF COURSE BECAUSE THERE IS A
NATURAL COMPONENT OF POLICY
INVOLVED BE THE NSPN. IT MAKES
EASY TO PARTICIPATE IN THINGS
LIKE WRITING ON EDS, PUBLISHING
ARTICLES, SO ON SO FORTH. THE
LAST THING I WANT TO LET YOU
KNOW IS THAT MY EXPERIENCE SPANS
INDUSTRY, I GET NON-PROFITS I AN
ENTREPRENEUR GENERATOR HEART SO
SOME OF MY RECENT INVOLVEMENTS
HAVE BEEN GETTING SOME PRE-NBA
COURSE WORK FROM BUSINESS SCHOOL
SO HOPE TO GET INTO ANTHROPOLOGY
SPATES WHICH IS WHY I ASKED --
SPACE WHICH IS WHY I ASKED DR.
BARGMANN THIS MORNING WHETHER
THERE IS AN OPPORTUNITY. SO IN
SHORT HA IS ME. I LIVE IN -- IT
IS A BEAUTIFUL PLACE, WE SHOULD
SRI IS IT, IT IS HOT AND
HAPPENING, THIS IS THE LAND OF
THE (INAUDIBLE). THANK YOU SO
MUCH.
>> THANK YOU ALL SO MUCH. NOW WE
WANT TO OPEN THE FLOOR UP FOR
ANY QUESTIONS THAT HAVE COME UP
ACROSS THE DIFFERENT SESSIONS
TODAY OR ANY OTHER TOPICS,
ANYONE WOULD LIKE TO DISCUSS,
PLEASE USE THE RAISE HAND
FUNCTION TO ASK YOUR QUESTION,
ALEX AND I ARE GOING TO CALL ON
PEOPLE IN THE ORDER THAT WE SEE
ON THE SCREEN. IF YOU COULD
PLEASE INTRODUCE YOURSELF BEFORE
ASKING YOUR QUESTION WE
APPRECIATE IT. I SEE A RAISE
HAND FROM SARANYA.
>> MY NAME IS SARANYA POST DOC
AT NATIONAL INSTITUTE OF HEALTH
AND PASSIONATE ABOUT SCIENCE
ADVOCACY AND ALSO SCIENCE --
TRYING FOREIGN SCIENCE POLICY
EVENTUALLY SO I HAVE A COUPLE OF
QUESTIONS, MY FIRST ONE, THIS
MIGHT BE MORE RELEVANT TO LORI,
SO THERE WAS A DISCUSSION ABOUT
DIFFERENT ASKS, WHEN YOU DO YOUR
-- YOU ASK FOR CERTAIN BUDGET
NUMBER AFTER DISCUSSION ASK FOR
NIH OR NSF, SIMILAR DAYS ARE
DONE BY OTHER SOCIETIES LIKE
(INAUDIBLE) A LOT OTHER
SOCIETIES. IS THAT CONSENSUS
AMONG DIFFERENT SOCIETIES WHAT
THE ASK IS.
>> GREAT QUESTION.
>> YEAH.
>> GREAT QUESTION. YES, THERE
IS. WE WANT TO HAVE A CONSISTENT
ASK, SO WHAT FASEB ASKS FOR IS
SAME WHAT SFN ASKS FOR AS FAR AS
DOLLAR AMOUNT, THE IDEA IS IF WE
HAVE A SINGLE ASK AND DECISION
MAKERS UNDERSTAND WE ALL HAVE
CONSENSUS, IT IS EASIER FOR THEM
TO KNOW WHAT TO THINK ABOUT AND
TO VOTE FOR. IF WE ALL GO IN
WITH OUR SEPARATE ASKS FOR HOW
MUCH MONEY THAT WE WANT, THE
BUDGET INCREASE MANGES IT REALLY
-- MAKES IT REALLY DIFFICULT FOR
THEM. SO GREAT QUESTION. SFN HAS
OUR OTHER PASSIONS AND ASKS AND
EXAMPLE OF THAT IS THE SUPPORT
FOR ANIMAL MODELS AND RESEARCH.
>> THANK YOU.
>> GREAT QUESTION. WE ARE DELAY
WITH THAT THIS YEAR BECAUSE THE
FOCUS AND THE WORRY WAS ON
FISCAL YEAR 22. BUDGET AND
FEDERAL FISCAL YEAR STARTS
OCTOBER 1 AND NOW IT IS MARCH
AND IT WAS JUST PASSED LAST
WEEK. SO WE ARE SIX MONTHS INTO
THE CURRENT FISCAL YEAR BEFORE
WE HAD A BUDGET SO NOW IT IS
KIND OF A SCRAMBLE TO GET
EVERYTHING TOGETHER WITH WHAT
OUR ASKS SHOULD BE FOR FISCAL
YEAR 23.
>> SO LOOK AT WHAT THE NUMBERS
ARE.
>> YEAH. NONE OF US WERE CERTAIN
WHAT WOULD BE APPROVED IN FISCAL
YEAR 22 BUDGET SO THAT MADE IT
HARD TO KNOW WHAT THE ASK SHOULD
BE FOR FISCAL YEAR 23. SO WILL
IS WORKING HARD IN THESE DAYS
LEADING UP TO HILL DAY AND MANY
OF THE OTHER SOCIETIES HAVE HILL
DAY DURING THE SAME TIME FRAME
THAT THE SOCIETY FOR
NEUROSCIENCE HAS THEIRS SO OUR
CONGRESSMEN WILL BE GETTING THE
SAME MESSAGE.
>> THANK YOU. I HAVE A QUESTION
FOR THE GROUP THEN SRI PLEASE
FEEL FREE TO TAKE THE NEXT
QUESTION. SO SCIENTISTS HAVE
DEMANDS ON THEIR TIME. SO
CURIOUS ABOUT THE IMPORTANCE OF
ENGAGING IN SCIENCE ADVOCACY AS
A TRAINING.
>> HAPPY TO JUMP IN ON THAT.
MAYBE YOU WERE DIRECTING AT SRI.
I THINK AS RESEARCHERS ADVOCACY
SHOULD HAPPEN AT ALL LEVELS AND
AS SOON AS POSSIBLE.
AND AS I HAD MENTIONED DURING MY
PRESENTATION AND THE QUESTIONS
SESSION I THINK AS STUDENTS HAVE
ALSO OF DEMANDS ON THEIR TIME
AND THEY ARE TAKING COURSES AND
THEY ARE TRYING TO DEVELOP THEIR
DISSERTATIONS AND THEY HAVE
THEIR QUALIFYING EXAM, SOMETIMES
IT IS HARD TO FIT THIS EXTRA
WORK IN SO FOR DIFFERENT
STUDENTS IT IS COMING IN AT
DIFFERENCE TIMES BUT I THINK I'M
COURAGE STUDENTS AND POST-DOCS
AND RESEARCHERS AT ALL LEVEL WE
HAVE TO USE OR VOICES. IT IS
REALLY IMPORTANT. IF IT IS NOT
US THEN WHO. THE STUDENTS ARE
THE NEXT GENERATION OF
SCIENTISTS SO CAN'T WAIT UNTIL
YOU ARE FULL PROFESSOR LIKE ME.
TO START HAVING THESE
CONVERSATIONS. STARTING SOONER
THE BETTER. IN MY OPINION.
>> I CAN ADD TO THAT, THAT WAS A
GREAT ANSWER, ONE OF THE REASONS
I ADVOCATE I TOOK THE REIGNS
FROM MY DAD WHEN HE PASSED AWAY
HE WAS A CAREGIVER FOR MY MOM
FOR 11 YEARS AND EARLY IN MY
MOM'S DISEASE MY DAD WAS
CHALLENGED BY A CLOSE FRIEND OF
HIS.
HE SAID MARTY IF YOU DON'T DO IT
WHO IS GOING TO DO IT, YOU ARE
THE ONLY ONE THAT KNOWS ABOUT
THIS. A LOT OF ALZHEIMERS
ADVOCATES ARE CAREGIVERS SO TALK
ABOUT SHORTNESS OF TIME, THERE
IS NO TIME. WE -- IT IS THE 24
HOUR DAY, EVERYONE IS SHORT ON
TIME. I CAN SPEAK FROM MY OWN
EXPERIENCE AS NON-SCIENCE
ADVOCATE AS AND ADVOCATE MORE
ROLE OF CAREGIVER, SOME OF MY
MOST MEANINGFUL AND EFFECTIVE
MEETINGS, THAT INCLUDES ONE JUST
A FEW YEARS AGO WITH SAHBA AND
COLLEAGUE GABRIELLEA INVOLVE
HAVING SCIENTISTS IN THE ROOM.
OUR LEGISLATORS HEARING FROM US
IS VERY IMPORTANT AND HEARING
OUR STORIES IS VERY IMPORTANT.
US BEING ABLE TO CONNECT OUR
STORIES, TO WHAT RESEARCHERS ARE
DOING THE LAST THING AN
ALZHEIMERS ADVOCATE WANTS TO
HEAR IS FUNDING IS BEING CUT
BECAUSE RESEARCHERS DON'T HAVE
-- RESEARCHERS DON'T HAVE JOBS.
WE DO NOT WANT TO HEAR THAT. SO
WE ARE GOING TO BUILD ON YOUR
NEEDS AND YOUR GOING TO BE ABLE
TO BUILD ON OUR STORIES.
MANY -- IT IS JUST PAIRING OF
THE TWO IS MORE EFFECTIVE THAN
YOU CAN IMAGINE.
>> I HAVE A FAMILY MEMBER WHO
PASSED FROM ALZHEIMERS DISEASE
SO LISTEN TO YOUR STORY RESONATE
WITH ME, THAT WAS MY
GRANDMOTHER. THE FACT THAT WOMEN
ARE AT HIGHER RISK FOR
ALZHEIMERS DISEASE IS CONCERN
FOR ALL THE WOMEN OF COURSE BUT
ALL THE MEN WHO HAVE MOTHERS AND
SISTERS AND AUNTS AND GRAND
MOTHERS SO IT IS A CONCERN FOR
ALL OF US. I DO HAVE AN
ALZHEIMERS RESEARCH PROGRAM IN
MY LABORATORY, I'M AN ANIMAL
MODEL RESEARCHER, U HAVE A GRANT
FROM NIA I TREASURE WE HAVE AN
ALZHEIMERS DISEASE RAT MODEL AND
TALENTED WOMEN RIGHT NOW IN MY
LAB WHO WERE WORKING FURIOUSLY
TO TRY TO UNDERSTAND WHAT IS
GOING ON. EARLY IN THE DISEASE.
>> THANK YOU FOR WHAT YOUR TEAM
IS DOING AND WHICH LOVE TO HAVE
THEM JOIN US ON OUR HILL DAY
COMING UP.
>> ON THAT NOTE, COULD OUR
PANELISTS COMMENT ON SOME LOW
BARRIER TO ENTRY LESS TIME
INTENSIVE OPPORTUNITIES TO
BECOME ADVOCATE?
>> I AM GOING TO TOUCH UPON THAT
AS WELL, ESPECIALLY HAVING
FINISHED MY POST DOC LAST YEAR
IN BEING MORE RECENTLY IN THAT
SPACE. SO AS WE ALL KNOW
RESEARCH CAN TAKE UP A LOT OF
OUR TIME. AND SOMETIMES TAKE UP
OUR SLEEP TOO. BUT THERE ARE LOT
OF THINGS YOU CAN DO ON YOUR OWN
TIME ENGAGING ON SOCIAL MEDIA,
LOW BARRIER TO ENTRY. SO
BECOMING ACTIVE ON TWITTER
ENGAGING WITH YOUR LOCAL
COMMUNITY THAT WAY, ENGAGING
WITH YOUR MEMBERS OF CONGRESS
THAT WAY, THINGS YOU CAN DO WITH
YOUR FINGERTIPS IN FRONT OF YOUR
COMPUTER. SOMETIMES GETTING OUT
INTO THE COMMUNITY AND
PARTICIPATING IN EVENTS THAT ARE
HAPPENING. ENGAGING IN -- SO
GOING TO EVENTS THAT OTHER
GROUPS PLAN TO DO SCIENCE
OUTREACH IS ALSO REALLY GRATE
WAY TO ENGAGE AND BUILD UP YOUR
ADVOCACY SKILLS. SOME OTHER
THINGS YOU CAN DO THAT AREN'T
TIME INTENSIVE AND THINGS YOU
CAN DO ON YOUR OWN TIME IS TO
WRITE BLOGS AND ON EDS. THESE
ARE THINGS THAT DON'T HAVE TO
HAPPEN IMMEDIATELY, YOU CAN
SPEND TEN, 15 MINUTES PER DAY
WORKING ON SOMETHING LIKE THIS
AND FIND SOMEWHERE TO PUBLISH
IT. SO YOU DON'T HAVE TO FLY TO
WASHINGTON D.C. HOP ON ZOOM FOR
MEETING WITH MEMBER OF CONGRESS
IF THAT MAKES YOU NERVOUS. THERE
ARE OTHER THINGS YOU CAN DO FOR
ADVOCACY.
>> I WILL CHIME IN QUICKLY AND
KATHERINE IF YOU WANT TO ADD TO
THIS. SOCIETY FOR NEUROSCIENCE
HAS LANGUAGE ALREADY AVAILABLE
THAT YOU CAN JUST BORROW
ALZHEIMERS SOCIETY YOU HEARD
THAT AD TODAY THERE IS LANGUAGE
ALREADY AVAILABLE THAT YOU CAN
USE QUICKLY SO YOU DON'T HAVE TO
SIT AT YOUR COMPUTER KEYBOARD
AND THINK NOW WHAT DO I SAY. I
WOULD ENCOURAGE YOU THE LOOK FOR
THOSE RESOURCES, DOWNLOAD THEM,
PUT THEM IN AN EMAIL AND SEND
THEM SO KATHERINE YOU WANT TO
ADD TO THAT.
>> THANK YOU SO MUCH, YOU
TOUCHED ON THAT EARLIER IN YOU
ARE YOU PRESENTATION. SFN OFFERS
ADVOCACY ACTION CENTER. AS LORI
MENTIONED EARLIER IS PRE-WRITTEN
MESSAGE YOU CAN SEND TO YOUR
FEDERAL LEGISLATORS IN THE
SENATE AND HOUSE. ALL YOU HAVE
TO DO IS ENTER YOUR ADDRESS AND
AUTOMATICALLY POPS UP WHO YOUR
FEDERAL LEGISLATORS ARE. YOU ARE
WELCOME TO PERSONALIZE THE
MESSAGE TO INCLUDE STUFF ANT
ABOUT YOUR OWN RESEARCH AND WHY
FEDERAL FUNDING IS IMPORTANT. WE
ENCOURAGE OUR MEMBERS, EVERYONE
TO CHECK THAT RESOURCE OUT
BECAUSE IT IS SIMPLE, LIKE YOU
WERE JUST TALKING ABOUT, DOES
NOT TAKE TIME BECAUSE THE
MESSAGES ARE ALREADY PRE-WRITTEN
FOR YOU, THAT IS GREAT RESOURCE
WE OFFER. SO I CAN PUT THE LINK
TO OUR ACTION CENTER IN THE CHAT
AND WE HOPE THAT YOU WILL TAKE
ADVANTAGE OF IT.
>> THE ALZHEIMERS ASSOCIATION
HAS A TEXT TO ACTION AND IT
REALLY COULDN'T BE EASIER, YOU
GET A TEXT WE DO IT BOTH FEDERAL
AND STATE LEVEL WE HAVE OUR
MARYLAND, I LIVE IN STATE OF
MARYLAND AND WE HAD OUR ADVOCACY
WEEK, AND DURING ANY BILLS THAT
CAME UP DIALING WITH ALZHEIMERS
OR DEMENTIA ISSUES, WE HAVE A
TEXT ALERT. SERIOUSLY WHAT
KATHERINE SAID, YOU JUST -- YOU
CLICK THE LINK, IT FILLS IN YOUR
INFORMATION. AT THE SATE STATE
LEVEL I HEARD BACK DIRECTLY IN A
TWEET FROM LEGISLATOR SAYING HEY
SUE THANKS IT WAS GOOD TO MEET
YOU LAST WEEK KIND OF THING. IT
GETS MORE INFORM MALL LOCAL
LEVEL BUT YOU -- THEY READ THEM,
IT MAKES A DIFFERENCE.
>> SO I WANT TO ADD TO ALL THE
WONDERFUL COMMENTS THAT
PANELISTS MADE. THE FIRST I GOT
INVOLVED IN ADVOCACY WAS
BASICALLY FOLLOWING LOCAL
CONGRESSMAN'S INSTALLER, I
SUBSCRIBE TO THAT SO I CAN GET
UNDERSTANDING WHAT THE ISSUES
ARE THAT DRIVES MY LOCAL
CONGRESSMAN AND SENATORS SO
THERE'S ALWAYS A TOOL AND
CONTACT FORM ON THE WEB PAGE
ALLOWS YOU -- THERE'S ALSO A
DROP DOWN MENU THAT ALLOWS YOU
TO PICK ON THE ISSUE YOU WANT TO
TALK TO THEM ABOUT, AND USUALLY
WHEN YOU PUT IN A DETAILED
MESSAGE THERE, THAT LETS THEM
KNOW YOU DON'T KNOW WHAT YOU ARE
TALKING ABOUT YOU U RECEIVE A
FORMAL RESPONSE OR -- THAT'S MY
EXPERIENCE. SOMETIMES WHEN
CONGRESS IS IN SESSION AND AND
SENATORS ARE IN WASHINGTON YOU
WILL NOT HEAR BACK BUT NOT
UNUSUAL TO GET FEEDBACK
SOMETIMES A COUPLE OF MONTHS
DOWN THE ROAD BUT ONCE YOU
ESTABLISHED THAT MECHANISM AND
EMAIL THEM A FEW TIMES THEY KNOW
THERE IS ENGAGED CONSTITUENT,
MOST OFTEN YOU RECEIVE A FORMAL
LETTER ON CONGRESSIONAL LETTER
HEAD FROM YOUR CONGRESSMAN AND
POTENTIALLY FOLLOW-UP. SO THAT
IS THE FIRST WAY I STARTED DOING
THAT. TWO OTHER THINGS I WANT TO
POINT OUT, COUPLE OF RESOURCES,
THERE A NICE NEW RESOURCE CALLED
POP VOP WHICH I THINK IS PLAY ON
VOX, THE PEOPLE, IT IS A TOOL
FROM THE SOMEWHERE IN THE BAY
AREA, SO SOME KIND OF START UP
BUT WHAT I LIKE ABOUT THAT TOOL
IS YOU CAN SEE DETAIL BIO OF
CONGRESSIONAL PEOPLE, ALL THE
ISSUES, DIRECTLY FROM THAT
INTERFACE YOU GET TO UNDERSTAND
WHAT DRIVES THAT PARTICULAR
CONGRESSMAN, WHAT IS THE VOTING
RECORD, WHAT ISSUES ARE DEAR TO
THEM, HAVE THEY CHANGED ANY
ROADS IN THE PAST, BLAH BLAH
BLAH SO I FOUND THAT INCREDIBLY
USEFUL U. I HAVE DONE ACTION
ALERTS TOO, SO SEND ME SOMETHING
I COPY PASTE AND SEND IT.
BUT TO BE HONEST, I FOUND THE
POPVOX TO TAKE THAT GAME TO THE
NEXT LEVEL. SO I LIKE THAT. THE
OTHER THING THAT SOPHIA MADE
ABOUT ON EDS, THEY ARE ON
SEVERAL TRAINING WEBINARS AND
WORKSHOPS SO IF YOU ARE SOMEONE
WHO LIKES TO WRITE AND
INTERESTED IN WRITING OP EDS I
SUGGEST YOU GET INVOLVED WITH
THE OP ED PROJECT. IT IS A NICE
TOOL.
LASTLY I HAD A COUPLE OF
QUESTIONS FOR LORI BECAUSE SHE
IS INVOLVED IN ADVOCACY. SO IN
TERMS OF ASK MECHANISM, WHAT ASK
MECHANISM HAVE YOU FOUND TO BE
THE MOST BENEFICIAL?
SEVERAL WAYS TO ASK BUT IN YOUR
EXPERIENCE WHERE HAVE YOU
RECEIVED THE MOST POSITIVE
FEEDBACK. THAT IS ONE QUESTION.
SECOND IS, DO YOU SUBSCRIBE TO
THEORY OF INDIVIDUAL ADVOCACY OR
GROUP ADVOCACY?
WHAT IS YOUR EXPERIENCE WITH
THAT?
>> BOTH GREAT QUESTIONS. TO MOST
THE MOST EFFECTIVE IS A PERSONAL
CONVERSATION. AND SO THAT THE
STAFF AND REPRESENTATIVES AND
SENATORS CAN HEAR THE PASSION IN
OUR VOICES AND EXPRESSION ON OUR
FACES THAT IS WHY PARTICIPATION
IN HILL DAY IS SO IMPORTANT.
SOCIETY FOR NEUROSCIENCE PUTS SO
MUCH TIME AND EFFORT INTO THAT
ANNUAL EVENT AND I KNOW OTHER
SOCIETIES DO TOO. SO DEVELOPING
THAT PERSONAL CONNECTION FACE TO
FACE AND ON ZOOM PAST COUPLE OF
YEARS THEY CAN STILL HEAR THAT
PASSION IN OUR VOICES AND
EXPRESSION IN OUR FACES, TO ME
THAT IS THE MOST EFFECTIVE, THAT
DOESN'T MEAN THE LETTERS AND THE
EMAILS GET IGNORED.
THEY ARE READ AS WELL. HEARING
THE VOICE I THINK THAT IS WHERE
I HAVE SEEN THE MOST SUCCESS
PERSONALLY WHEN I HAD PERSONAL
CONVERSATIONS, WITH LEGISLATURE,
THEY REMEMBER ME. SO THEN THE
FACT THEY REMEMBER ME THEY
LISTEN TO WHAT I SAID. I THINK
ADVOCACY AND GROUPS ALSO SINGLES
TOO, THEY HAVE DIFFERENT LEVELS
OF IMPACT. SO I THINK BOTH
STRATEGIES ARE EFFECTIVE.
>> THANK YOU, LORI.
>> THANK YOU SO MUCH, LORI AND
SUE, CAN YOU COMMENT AND SHARE
ABOUT THE NATURE OF DAY ON THE
HILL?
SFN AND ALZHEIMERS ASSOCIATION
HOSTS?
>> SURE I WILL GO FIRST. WE HAVE
OUR DAY ON THE HILL EVERY YEAR
WE UNFORTUNATELY WE MISSED IT
COMPLETELY IN 2020 AND LAST YEAR
WE DID EVERYTHING VIRTUALLY.
LIKE LORI SAID IS A LITTLE MORE
CHALLENGING. THEY CAN STILL
LEGISLATORS CAN HEAR YOUR VOICE
AND SEE YOUR EMOTION BUT IT IS
-- IT IS A LOT BETTER WHEN YOU
ARE ABLE TO GET THERE IN PERSON.
WE ANNUALLY HAVE OUR ADVOCACY
FORUM, OUR AIM ADVOCACY FORUM
WHICH IS A THREE DAY EVENT, AND
THE FIRST TWO DAYS ARE A LOT OF
SESSIONS GETTING READY FOR OUR
DAY ON THE HILL. SO IT IS A LOT
OF TRAINING. IT IS A LOT OF
INFORMATION. BUT WE LEARN ABOUT
THE ASKS WE ARE ABOUT TO MAKE WE
USUALLY HAVE ASK FOR FEDERAL
RESEARCH AT NIH AND THEN
LEGISLATION THAT JEN WAS TALKING
ABOUT DURING HER PRESENTATION.
SO WE HAD A FEW DAYS OF LEARNING
ABOUT THE ISSUES, AND OF
INTERACTING AND NETWORKING WITH
EACH OTHER. AND THEN WE HAVE OUR
DAY ON THE HILL WHEN WE CAN TAKE
A CAB OR YOU CAN WALK OR YOU CAN
TAKE A BUS AT THE CAPITOL HILL
AND WE HAVE -- WE ARE WEARING
PURPLE SASHES AND THE
ASSOCIATION TAKES CARE, THEY
HAVE A SCHEDULING CONSULTANT
FIRM THEY TAKE CARE OF DOING ALL
OF OUR APPOINTMENTS FOR US. IF
WE CAN'T MAKE ONE IF WE ARE
LATE, WE ARE GOING TO HAVE IN
PERSON DAY THIS YEAR, IT IS
GOING TO BE A LITTLE BIT
DIFFERENT JUST BECAUSE NOT JUST
SECURITY MEASURES ON THE HILL
BUT COVID MEASURES ON THE HILL.
SO IT WILL BE DIFFERENT THIS
YEAR. BUT WE JUST BASICALLY GET
-- WE HAVE A COUPLE OF DAYS OF
SESSIONS AND EDUCATION. AND WHEN
WE GET INTO OUR HILL OFFICE
LEGISLATIVE VISITS WE ARE REALLY
FORTUNATE IF WE GET TO MEET WITH
THE ACTUAL LEGISLATOR THAT'S
GOTTEN HARDER OVER THE YEARS
BECAUSE THEY KEEP BUSY UP THERE.
BUT WE HAVE ALSO GOTTEN TO KNOW
THE HEALTH LEGISLATIVE AIDS WELL
AND LOOK FORWARD TO US COMING
BACK AND YOU LEARN QUICKLY THAT
THE WORK OF CONGRESS IS NOT JUST
DONE BY THE ELECTED OFFICIALS
BUT BY ALL STAFF. THEY WORK
REALLY HARD. AND THEY ASK GREAT
QUESTIONS. SO THAT IS JUST KIND
OF A BRIEF OVERVIEW OF WHAT OUR THAT AS
SOMEONE WHO IS PARTICIPATED ON
GLOBAL HEALTH CAPITOL HILL DAYS
NUMBER OF TIMES. NOT IN PERSON
UNFORTUNATELY BECAUSE I GOT
INVOLVED IN GLOBAL HEALTH AFTER
THE PANDEMIC HIT.
TRADITIONALLY WHEN YOU DO THOSE
CALLS YOU MEET A LEGISLATIVE
ASSISTANT OR LEGISLATIVE
CORRESPONDENT BUT IF YOU GET
LUCKY SOMETIMES THERE WILL BE
SOMEBODY HIGHER UP IN THE FOOD
CHAIN LIKE POLICY HEALTH ADVISOR
SO ONE THING I DO BEFORE I GET
ON THE CALL, IN ADDITION TO
THESE QUEUES WE ARE GOING TO
TALK -- ISSUES WE TALK ABOUT I
TRY TO READ UP USING RESOURCES
LIKE -- THAT GIVES YOU DETAILS
ABOUT THE BACKGROUNDS AND ALL
THAT, AND TRY TO MAKE A
CONNECTION ON THAT FIRST COURT
BECAUSE WHEN YOU MAKE THE
CONNECTION YOUR ISSUE BECOME AS
LITTLE MORE IMPORTANT TO THEM
BECAUSE THEY FIELD THESE CALLS
EMAILS LETTERS ALL THE TIME
THROUGHOUT THE YEAR. IT IS
IMPOSSIBLE FOR THEM TO
DISTINGUISH WHO YOU ARE, WHAT
YOU ARE INTERESTED IN, IF YOU
DON'T MAKE THAT EXTRA EFFORT. SO
THAT'S POINT NUMBER ONE. IN
TERMS OF PREPARING FOR THE ASKS,
IT IS USUALLY NICE TO HAVE A ONE
PAGER ESPECIALLY IF YOU ARE IN A
ZOOM CALL, WITH SOME VERY HIGHLY
SPECIFIC BULLETED POINTS THAT
YOU WILL TAKE UP WITH THEM WHEN
YOU ARE ON THE CALL, AND THEN
IMMEDIATELY AFTER THE CALL WHAT
YOU DO IS SEND THEM THAT ONE
PATIENT, SAY HEY IT WAS ME I WAS
WITH YOU ON THE ZOOM CALL HERE
IS ONE PAGE YOU WANTED TO TALK
ABOUT, THIS IS ALL MY CONTACT
INFORMATION IF THERE IS ANYTHING
FURTHER YOU WANT, I HAVE A
WEALTH FULL OF DOCUMENTS I CAN
SEND YOU, BUT JUST BEING KIND
AND SO PLEASE FEEL FREE TO REACH
OUT AND IF YOU WOULD LIKE ME TO
GO TO LOCAL OFFICE, WHERE YOUR
OFFICE IS, I CAN ALWAYS MEET
THAT CALL. SO THAT'S POINT
NUMBER TWO. THE THIRD THING IS
USUALLY ALL THESE CALLS ARE VERY
HIGH ENERGY AND ENTHUSIASM BUT
THE MOST IMPORTANT THING IS ALL
THE POST CALL FOLLOW-UP ACTIONS
THAT YOU TAKE.
WE JUST DO THE CALL, EVERYTHING
YOU SAID SAY YES, IT IS VERY
IMPORTANT TO SIT ON THEM AFTER
THE CALL, MAKE SURE THAT YOU GET
THIS DONE.
BECAUSE PRIORITIES CHANGE
POLITICAL ALIGNMENTS CHANGE,
FUNDING CHANGE, THERE'S ALWAYS
AN ELECTION CYCLE TO WORRY ABOUT
AND THEN ON TOP OF IT, WE HAVE
THINGS LIKE THE COVID PANDEMIC.
SO IT IS VERY IMPORTANT TO HAVE
A DEDICATED POST FOLLOW-UP
ACTION PLAN ONCE YOU GET INTO
THE ADVOCACY DOMAIN.S THAT MY
EXPERIENCE OVER THE LAST THREE
OR FOUR YEARS.
>> I WILL ADD ONE OTHER POINT TO
THIS. I MENTION I THINK IT WAS
DURING MY PRESENTATION AND THE
QUESTIONS ABOUT MAKING VIDEOS,
IF YOU CAN'T GO IN PERSON AND IF
YOU CAN'T GET ON ZOOM YOU CAN
MAKE A VIDEO. AND USE YOUR CELL
PHONE AND HAVE YOUR PASSIONS
CLEARLY ARTICULATED. AND YOU CAN
EVEN VIDEO SOME OF YOUR PEERS
DOING RESEARCH, IF YOU WANT TO
DO A VIDEO LAB TOUR I HAVE FOUND
THAT TO BE REALLY EFFECTIVE FOR
ALL KINDS OF PEOPLE INCLUDING
FAMILY MEMBERS. THAT DON'T FULLY
UNDERSTAND WHAT I DO. SO I WOULD
ENCOURAGE YOU TO USE THAT AS
ADDITIONAL WAY TO COMMUNICATE TO
YOUR DECISION MAKERS. AND ONE
OTHER POINT THAT I MY MANY
PEOPLE ARE UNAWARE, MOST
UNIVERSITIES MOST R 1
UNIVERSITIES THEY PUT TOGETHER A
FEDERAL AGENDA. THEIR OWN ASKS.
SOCIETY FOR NEUROSCIENCE WE HAVE
OUR ASKS WE COLLABORATE WITH
OTHER SOCIETIES, TO MAKE SURE WE
ARE IN ALIGNMENT THAT INDIVIDUAL
INSTITUTIONS HAVE THEIR OWN
PRIORITIES. OFTEN RESEARCH R 1
INSTITUTIONS PRESIDENT OR VICE
PRESIDENT FOR RESEARCH MAY GO TO
THE HILL AND HAVE CONVERSATIONS
ABOUT THEIR SPECIFIC ASKS. I
WOULD ENCOURAGE ALL OF YOU TO
INQUIRE AT YOUR INSTITUTION,
WHAT IS IN THE FEDERAL ASK. SO
THAT YOU ARE AWARE OF WHAT IS
GOING ON. AT YOUR INSTITUTION
AND IT IS A GOOD IDEA TO LET
YOUR PUBLIC AFFAIRS OFFICE KNOW
THAT YOU ARE ENGAGED AND THAT
YOU ARE ENGAGING. SO THAT THEY
AREN'T BLIND SIDED AND IT IS
KIND OF A PROFESSIONAL COURTESY
TO LET THEM KNOW THAT HEY I'M
GOING TO BE ENGAGING IN THIS
WAY, ACTIVATING MY RIGHT AS A
CONSTITUENT IN MY SPACE TO REACH
OUT TO THE LEGISLATURE.
>> I WAS GOING TO SAY THESE HILL
DAYS PARTICIPATING IN EXISTING
HILL DAYS THROUGH DIFFERENT
ORGANIZATIONS, I THINK ANOTHER
LOW BARRIER TO ENTRY
OPPORTUNITY.
FOR THOSE WHO MIGHT BE
INTERESTED.
I AD HAD A FOLLOW-UP QUESTION
FOR SUE. I DON'T WANT TO CUT YOU
OFF.
>> THE OTHER THING I WANT TO
POINT OUT IS USUALLY THESE ASKS
THAT ONE PAGE SHEET GIVEN AT THE
LAST MINUTE, YOU HAVE 24 OR 48
HOURS TO DIGEST THAT ASK AND GET
LEVEL OF PROFICIENCY, SO WHEN
YOU MAKE THE CALL YOU ARE NOT
TALKING OFF A SHEET, APPEAR
NATURAL AND SOMEONE WHO KNOW IT
IS SUBJECT MATTER. SO THAT
SOMETIMES IS A CHALLENGE
ESPECIALLY LOTS OF NUMBERS FIVE
OR TEN ASKS, SO ONE OF THE WAYS
I HAVE LEARNED OVER THE YEARS TO
CIRCUMVENT THAT IS AAAS FOR
EXAMPLE RUNS A POLICY MAKERS
WORKSHOP I FOUND USEFUL BECAUSE
IT TELLS YOU HOW THE WHOLE
SYSTEM WORKS SO YOU DON'T GET
INTIMIDATED ON THE CALL, WITH
CONGRESSMEN OR SOMEBODY IN
OFFICE.
YOU KNOW WHAT LYNNGO THEY TALK
AND HOW THE APPROACH THE SUBJECT
NUMBER ONE. TWO IS IF YOU GET A
GOOD UNDERSTANDING OF HOW THE
BUDGETARY PROCESS WORKS, WHEN
YOU ARE TALKING ALL THOSE
NUMBERS, YOU CAN BRING TO YOUR
VICE A PASSION AND AUTHORITY YOU
WILL NOT BE ABLE TO, IF YOU
DON'T UNDERSTAND HOW THAT WORKS
SO SOME LOW LEVEL PARDON ME FOR
SAYING THAT, LOW LEVEL NEWLY
JOINED LEGISLATIVE AID WILL TALK
TO YOU LIKE HE OR SHE IS EXPERT
IN THAT DOMAIN AND YOU DON'T
KNOW WHAT YOU ARE TALKING ABOUT.
BUT IF YOU GET PAST THAT BARRIER
AND JUST SAY TOM OR -- I NEED TO
TALK TO YOUR CHIEF OF STAFF, OR
NEED TO TALK TO HEALTH POLICY
FROM SO AND SO, I KNOW THE
NUMBERS, I LIKE TO GET SOMEBODY
HIGHER UP IN THE FOOD CHAIN.
MOST OFTEN THAT LEVEL OF
AUTHORITY AND SERIOUSNESS YOU
WILL GO UP IN THAT FOOD CHAIN.
THOSE ARE THE PEOPLE WHO MAKE
THE DECISIONS AND SO PEOPLE AND
NAMES THAT I WANTED TO POINT
OUT, ONE IS ELLEN HEAT OFFICE OF
AAAS, THE OTHER IS MACK HALAHAN
OFFICE OF AAAS GOVERNMENT MACK
WAS INVOLVED IN FEDERAL
BUDGETARY PROCESS A NUMBER OF
YEARS, HE KNOW IT IS ONE MORE
THAN PROBABLY ANYBODY ELSE IN
THIS COUNTRY DOES. SO HE IS A
GREAT RESOURCE IF YOU ARE NOT
ABLE TO OBTAIN THE WORKSHOP,
HE'S WORKING WITH DOCUMENT AND
RESOURCE US TO HELP YOU PREPARE.
SO THOSE ARE COUPLE OF THINGS I
WANTED TO POINT OUT.
>> THANKS SO MUCH, SRI. SUE, YOU
ALLUDED IN YOUR INTRODUCTION TO
THE IMPORTANCE OF VOICE OF
SCIENTIST IN THESE ADVOCACY
EFFORTS, I WAS WONDERING IF YOU
CAN COMMENT MORE GIVEN MAJORITY
OF ATTENDEES ARE
NEUROSCIENTISTS.
>> YOU GUYS ARE MY ROCK STARS
BECAUSE SERIOUSLY, WHEN YOU ARE
A CAREGIVER FOR SOMEONE WITH
ALZHEIMERS DISEASE, ANY SERIOUS
FATAL ILLNESS, IT IS YOUR
SOMETIMES GRASPING AT STRAWS AND
YOU CAN GET INTO DESPERATE
MOMENTS. FOR ME HAVING THE
OPPORTUNITY JUST MYSELF OF
MEETING RESEARCHERS AND
SCIENTISTS, IT GIVES ME HOPE, IT
GIVES ME A GREAT DEAL OF HOPE,
JEN POLLACK TALKED ABOUT THE
ANNUAL INTERNATIONAL ALZHEIMERS
CONFERENCE HELD EVERY YEAR. IT
WAS IN WASHINGTON D.C. A FEW
YEARS AGO AND I WAS ABLE TO
VOLUNTEER AS GREETER WHEN PEOPLE
CAME IN GIVING DIRECTIONS.
I TOLD YOU I'M NOT A SCIENTIST
SO I WAS ABLE -- THAT WAS A JOB
I WAS ABLE TO DO WITH ALL THESE
AMAZING BRAINS FROM AROUND THE
WORLD. I WAS IN AWE AS I WAS
WATCHING THESE FOLKS COME IN AND
READING THEM AND IT OCCURRED TO
ME THAT ONE OF THESE FOLKS COULD
FIND -- THE ONE THAT'S GOING TO
DEVELOP TREATMENT FOR ALZHEIMERS
DISEASE.
IT IS HUMBLING, TO KNOW THERE'S
PEOPLE OUT THERE WORKING SO HARD
IN THIS FIELD AND THAT OUR
PASSIONATE ABOUT IT, THIS IS
SOMETHING YOU WANT TO DO. THIS
IS YOUR CAREER. THIS IS WHAT YOU
HAVE BEEN DREAMING OF DOING
WHETHER IN FIELD OF ALZHEIMERS
AND DEMENTIA OR ANOTHER SCIENCE.
SO WE ARE RELYING ON YOU, AS THE
SCIENCE, WE HAVE A TAG LINE
ALZHEIMERS ASSOCIATION THAT WE
ARE THE BRAINS BEHIND SAVING
YOUR BRAIN. BUT YOU ARE BRAINS
BEHIND ALZHEIMERS ASSOCIATION,
WE ARE FUNDING YOU, SO THAT YOU
CAN FIND ANSWERS FOR US. SO I
THINK JUST BASED -- TO DIRECT TO
YOUR QUESTION SAHBA, WHEN WE
COME IN AS ADVOCATE AND WE HAVE
MOVING STORIES, I -- IT WAS MY
MOM WHO HAD ALZHEIMERS DISEASE,
THERE ARE LITERALLY ADVOCATES OF
OLDER FOLKS WHO HAVE A CHILD IN
THEIR 40s DIAGNOSED WITH
ALZHEIMERS DISEASE, WITH YOUNGER
ONSET. SO SOME PEOPLE WITH
ALZHEIMERS DISEASE HAVE LIVING
ELDERLY PARENTS, YOU CAN
SOMETIMES CAN'T GET -- IT IS
HARD TO IMAGINE WHAT SOME FOLKS
ARE GOING THROUGH. YOU GET INTO
THIS ROOM AND TALK YOUR STORIES,
AND WE ARE ABLE TO SAY WE HAVE
SAHBA, ALEX AND GABRIELLE AND
ALL ON THIS CALL AND YOU ARE
ABLE TO TALK SPECIFICALLY ABOUT
WHAT YOU CAN DO WITH THE
RESEARCH DOLLARS WE ARE ASKING
FOR. ON BEHALF OF LOVED ONES. SO
IT IS LIKE I SAID IT IS A
POWERFUL, JUST A POWERFUL TEAM.
EVERYTHING THAT SRI JUST SAID
ABOUT RESOURCES AVAILABLE TO
ADVOCATES IS ABSOLUTELY TRUE. I
HI THE ALZHEIMERS ASSOCIATION IN
DOES A WONDERFUL JOB OF TRAINING
OUR ADVOCATES ESPECIALLY DURING
THE ANNUAL FORUM. I WILL ALSO
SAY THAT IF THIS PERSON CAN GO,
I HAVE LITERALLY HAD THE
OPPORTUNITY TO SIT AT A TABLE
WITH A SECRETARY OF HEALTH AND
HUMAN SERVICES. BECAUSE OF MY
ADVOCACY WORK. IN A MILLION
YEARS IF YOU ASKED WHEN MY MOM
WAS DIAGNOSED IF THAT WAS
SOMETHING THAT HAPPENED I WOULD
SAY YOU WERE CRAZY. BUT THAT'S
WHAT USING -- WHERE USING MY
VOICE HAS GOTTEN ME. WITH ALL
THAT Y'ALL ARE DOING AND YOUR
DEDICATING YOUR LIVES AND
CAREERS TO SCIENCE, AND TO
FINDING ANSWERS, LIKELY IS A
SAID, OR LORI EXCUSE ME, SAID IF
NOT YOU THEN WHO?
ASSOCIATION YOU GET YOU ARE
INVOLVED WITH, WILL -- IF YOU
ARE CONCERNED ABOUT USING YOUR
VOICE, NERVOUS IN ANY WAY, I
DON'T KNOW SAHBA MAYBE YOU
SHOULD TALK YOUR OWN EXPERIENCE
WITH US THAT DAY ON THE HILL
BECAUSE YOU CAN DO IT.
AND YOUR VOICES ARE GO IMPORTANT
FOR OUR LEGISLATORS TO HEAR.
THEY ASK US WHAT ARE WE SPEND
THIS MONEY ON?
WHAT IS IT USED FOR?
IF WE HAVE YOU IN THE ROOM
SAYING I FINISH THIRD DEGREE
PROJECT OR I DID THIS, ONE THING
THAT MY ASSOCIATION IS WORKING
WITH, THAT -- THOSE ARE THE
ANSWERS THAT ARE OUR ELECTED
OFFICIALS NEED AND WANT TO HEAR.
>> I WANT TO ADD ONE POINT, VERY
IMPORTANT POINT BECAUSE IT
COMPASSES ALL THE OTHER
IMPORTANT WE DISCUSS. IT IS A
POINT THAT SUE MADE. WHATEVER
YOUR TRAINING WHATEVER EXPERTISE
WHATEVER YOUR OTHER SKILLS ALL
THOSE THINGS NOTHING WILL BRING
THAT PASSION AND AUTHENTICITY TO
YOUR VOICE LIKE IF YOU HAVE A
PERSONAL STORY TO TELL. YOU MAY
BE HAVING HANDICAPS IN SOME OF
THOSE OTHER AREAS BUT IF YOU
HAVE A STORY YOU HAVE GONE
THROUGH THAT EXPERIENCE, YOU
WILL BE THE BEST PERSON TO
CAPTURE THAT AND BRING IT TO THE
ATTENTION OF THE PEOPLE WHO
IMMEDIATE TO MAKE THESE
IMPORTANT DECISIONS. SO THAT IS
PARAMOUNT IN MY OPINION. NO
AMOUNT OF TRAINING CAN
CIRCUMVENT THAT.
>> THANK YOU, SRI. I LOST MY
MOTHER TO ALWAYS HIGH MANIERS SO
I CAN ALSO SPEAK ON THAT. MY MOM
WAS HER CAREGIVER SO THAT WAS
ALSO, IT IS VERY -- I THINK
UNTIL YOU GO THROUGH SOMETIMES
YOU DON'T EVEN RECOGNIZE WHAT IT
TAKES TO BE A CAREGIVER UNTIL
YOU ARE ON THE OTHER SIDE. I
DON'T THINK YOU REALIZE WHAT IS
REALLY IMPORTANT FOR US TO SHARE
THESE CONVERSATIONS WITH
EVERYONE THAT WE KNOW. BECAUSE
WE ALL IMMEDIATE TO HEAR THIS
STORY.
SOPHIA I WANT TO ASK YOU A
QUESTION, I'M CURIOUS ABOUT YOUR
ROLE WITH THIS CIVIC ENGAGEMENT,
MY PROGRAM, THERE IS PERHAPS
ATTENDEE ON THE CALL CURIOUS TO
LEARN MORE ABOUT THAT PROGRAM
AND HOW THEY BECOME INVOLVED.
>> SURE. SO LIKE I HAD MENTIONED
EARLIER, THE CIVIC -- SORRY, THE
CIVIC ENGAGEMENT MICROGRANT
PROGRAM PROVIDES PROGRAMS AND
FUNDING SUPPORT TO SCIENCE
POLICY GROUPS ALL ACROSS THE
COUNTRY. WHAT THIS DOES IS ONE
WE CAN PROVIDE SEED FUNDING FOR
SCIENCE POLICY GROUPS TO GET
STARTED. SO IF YOU ARE AT AN
INSTITUTION THAT'S LOOKING TO
START SCIENCE POLICY OR SCIENCE
COMMUNICATION GROUP THIS IS ONE
AVENUE YOU CAN FIND FUNDING. THE
OTHER MODEL FUNDING THAT WE HAVE
IS TO PROVIDE FUNDING FOR
EXISTING SCIENCE POLICY SCIENCE
COMMUNICATION GROUPS TO CARRY
OUT VARIOUS PROJECTS THEY HAVE
TO ENGAGE LOCALLY WITH THE
PUBLIC OR TO ENGAGE WE LEKKED
OFFICIALS.
SO DIFFERENT PROJECTS WE HAVE
SUPPORTED HAVE BEEN CREATING
PODCAST SERIES, CREATING POSTER
SESSIONS WHERE YOU INVITE
LOCALLY ELECTED OFFICIALS WE
HAVE ALSO SUPPORTED A MEMBER OF
SCIENCE OUTREACH EVENTS, SO
CIVIC ENGAGEMENT HAPPENS AT ALL
DIFFERENT LEVELS AND THIS IS
SOMETHING THAT WE ARE VERY, VERY
SUPPORTIVE OF AND SO IF YOU WANT
TO LEARN MORE PLEASE VISIT
RESEARCH AMERICAS WEBSITE. AND
GO TO OUR ADVOCACY TAB AND LOOK
AT THE -- ADVOCACY ACTION TAB
AND CLICK ON THE LINK HOW TO BE
AND ADVOCATE TO LEARN MORE ABOUT
OUR GRANT PROGRAM.
>> THANK YOU, SOPHIA, I CAN PUT
TOGETHER LIST OF RESOURCES TO
ALL ATTENDEES WHO ARE HERE
TODAY. AND UNABLE TO ATTEND WITH
VIDEO RECORDING.
SO I WANT TO SEE IF THERE'S
ANYONE ELSE FROM THE AUDIENCE
WHO HAS A QUESTION. IF NOT, WE
CAN MOVE FORWARD TO THE CLOSING
REMARKS.
SO THANK YOU TO ALL OF OUR
SPEAKERS AND PANELIST FOR
SHARING THESE INSIGHTS AND FOR
YOUR TIME TODAY.
THERE'S SO MANY GREAT THINGS
BROUGHT UP AND SO MANY MORE
QUESTIONS TO UNPACK SO THIS
DEFINITELY WON'T BE THE LAST
TIME WE HAVE THIS CONVERSATION
WITH EACH OF YOU. A RECORDING OF
TODAY'S SESSION IS AVAILABLE AT
LATER DATE ALONG WITH RESOURCES
THAT WE SHARED.
FINALLY WANT TO THANK THE CHAN
ZUCKERBURG INITIATIVE FOR THEIR
SUPPORT TO MAKE THIS WEBINAR
POSSIBLE.
THANK YOU ALL SO MUCH FOR
JOINING TODAY.
HAVE A LOVELY WEEKEND.
>> THANK YOU SO MUCH.
>> THANK YOU SO SO MUCH TO
SPEAKERS AND PANEL LISTS WE ARE
THRILLED TO HAVE YOU AS A PART
OF THIS EVENT AND COULDN'T
APPRECIATE IT ENOUGH O. THANKS A
LOT. HAVE A GOOD REST OF YOUR
DAY.