2021 NINDS Nonprofit Forum

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The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to the annual Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff.

Agenda

(Includes links to session recordings)

Presenters

Rebecca G. Baker, Ph.D.

Dr. Rebecca G. Baker, Ph.D., is the director of the Helping to End Addiction Long-term^SM Initiative, or NIH HEAL Initiative^SM, in the Office of the Director, NIH. Dr. Baker leads coordination of NIH HEAL Initiative programmatic activities between the Office of the Director and relevant Institutes and Centers (ICs). She manages the Office of the NIH HEAL Initiative, including NIH HEAL Initiative staff, and oversees management of NIH HEAL Initiative governance committees. Dr. Baker helped develop the NIH HEAL Initiative, working closely with NIH and IC leadership. She also provides expert advice to and represents the NIH Director on initiative-related activities, including interagency efforts in pain and opioid research and policy.

Prior to holding this position, Dr. Baker was special assistant to the NIH Director and the Principal Deputy Director working directly with NIH leadership to analyze complex biomedical research policy issues and assist in the development of new science and policy initiatives. Before that, she worked in the NIH Office of Science, Outreach, and Policy, where she worked on legislative, communications, and policy issues. Dr. Baker also worked in the NIH Office of Science Policy, where she contributed to the development and implementation of the NIH Genomic Data Sharing Policy. Previously, she worked as a postdoctoral scientist using next-generation DNA sequencing to identify novel disease-causing genes in patients with rare immunological diseases. She earned her Ph.D. from the University of Pennsylvania and her bachelor’s degree from Cornell University.

Jeff Barrett, Ph.D.

Dr. Jeff Barrett is Senior Vice-President at the Critical Path Institute serving as the Executive Director of the Rare Disease Cures Accelerator, Data Analytics Platform and a critical liaison between C-Path and the pharmaceutical industry, foundations, and other key stakeholders, helping grow C-Path’s portfolio in drug development solutions, with a focus, but not limited to model-informed drug development (MIDD) and real world data (RWD) technologies. Jeff was previously Head of Quantitative Sciences at the Bill & Melinda Gates Medical Research Institute. In this role he was responsible for implementing model-based drug development, employing PK/PD modeling, statistics, and clinical trial simulations to advance the discovery and development of new medicines and vaccines.  Prior to MRI, he was Vice President, of Translational Informatics at Sanofi Pharmaceuticals.  He led various aspects of model-based decision–making spanning and provided leadership for Sanofi’s cloud-based, high-performance computing and “big data” initiatives. Jeff spent 10+ years at the University of Pennsylvania where he was Professor, Pediatrics and Director, Laboratory for Applied PK/PD at the Children’s Hospital of Philadelphia. Jeff received his B.S. in Chemical Engineering from Drexel University and Ph.D. in Pharmacokinetics from University of Michigan. He has co-authored over 175 manuscripts, is fellow of ACCP and AAPS and the recipient of numerous honors including ACCP awards for Young Investigator (2002) and Mentorship in Clinical Pharmacology (2007) and the AAPS Award in Clinical Pharmacology and Translational Research (2011). Dr. Barrett was awarded for Exceptional Innovation and Advancing the Discipline of Pharmacometrics at the International Society for Pharmacometrics (2013) and elected ISOP Fellow (2017). He is co-Specialty Chief Editor of Frontiers in Obstetric and Pediatric Pharmacology Journal and an active member of the Child Health and Human Development Pediatrics Subcommittee as a study section reviewer.  He was a past acting chair of the FDA Advisory Committee for Pharmaceutical Science and Clinical Pharmacology; a voting member of the committee for 8 years. 

Ronald Bartek

Ronald Bartek is co-founder and president of Friedreich’s Ataxia Research Alliance. A former partner and president of a business development/government affairs firm, he also served 20 years in the U.S. government, including on the U.S. House Armed Services Committee staff, at the U.S. State Department, on the U.S. delegation to the Intermediate-Range Nuclear Forces Treaty talks in Geneva, and as a CIA analyst. Bartek serves on the boards of the National Organization for Rare Disorders, Alliance for a Stronger FDA, and Alliance for Regenerative Medicine. He’s a member of the NIH/NCATS National Advisory Council, NIH/NCATS Cures Acceleration Network Review Board, and NIH National Advisory Neurological Disorders and Stroke Council. 

Richard Benson, Ph.D.

Dr. Richard Benson is Director of the Office of Global Health and Health Disparities (OGHHD) in the NINDS Division of Clinical Research. He is a leader in the fields of vascular neurology and health disparities research. His areas of research interest and expertise include: health disparities and health equity research, and minority, community, and global health. Dr. Benson has worked in the public and private sectors and is a volunteer with several professional organizations. He is a past president and current board member of the American Heart Association (AHA), Greater Washington Region (GWR). He was a member of the national AHA Stroke Council and is currently an American Academy of Neurology (AAN) Registries committee member. Dr. Benson received his B.S. in Chemistry from Fisk University, followed by an MD/PhD from Meharry Medical College in Neurophysiology (elected to AOA). Subsequently, he completed his neurology residency at the Harvard-Longwood neurology residency program in Boston, and a stroke fellowship at the Columbia University Neurological Institute in New York, while obtaining an M.S. in Epidemiology from the Mailman School of Public Health. After fellowship, Dr. Benson worked as a vascular neurologist in New York City at the Long Island Jewish Medical Center and St. Luke’s-Roosevelt Medical Centers. In 2005, he moved to the Washington D.C. area to work as a Program Director in what was then the Office of Minority Health and Research at the NINDS. He left the NIH in 2008 to focus on patient care, and in 2010 became Associate Medical Director of the NIH Stroke Program at Medstar Washington Hospital Center and Associate Professor of Clinical Neurology at Georgetown University Medical Center. Dr. Benson returned to the NINDS in 2019 to direct the OGHHD.

Director of the Office of Global Health and Health Disparities (OGHHD) in the NINDS Division of Clinical Research

Robyn Bent, RN, M.S. 

Robyn Bent joined the US FDA in 2019 as the director of the Patient-Focused Drug Development (PFDD) Program in the Center for Drug Evaluation and Research (CDER).  PFDD is an effort to systematically obtain patient input and facilitate the incorporation of meaningful patient input into drug development and regulatory decision making.  The PFDD initiative includes the CDER Standard Core Clinical Outcomes Assessments and Endpoints Pilot Grant Program which provides avenues to advance the use of patient input as an important part of drug development.  Prior to joining FDA, Robyn held several positions at the National Institutes of Health.  Captain Bent has extensive experience in clinical trial design, conduct, and oversight.  Robyn earned her Bachelor of Science in Nursing from The Catholic University of America and her Master of Science degree from the George Washington University.

Allyson, Berent, D.V.M., DACVIM

Dr. Allyson Berent is a veterinary internal medicine specialist who serves as the Director of Interventional Endoscopy Services at the largest animal hospital in the world, The Animal Medical Center, in New York City. After graduating from Cornell University College of Veterinary Medicine she completed an internship at the University of Minnesota and a residency in Small Animal Internal Medicine at the Veterinary Hospital of the University of Pennsylvania. After completing a fellowship in interventional radiology at the Veterinary Hospital of the University of Pennsylvania, a fellowship in Endourology at Thomas Jefferson University, and an Interventional radiology fellowship at the Hospital of the University of Pennsylvania, she served as an Adjunct Assistant Professor in Internal Medicine and Interventional Radiology/ Interventional Endoscopy at the Matthew J. Ryan Veterinary Hospital of the University of Pennsylvania. Dr. Berent has a particular focus on medical device development, stem cell therapy through regenerative medicine and selective arterial delivery, ureteral diseases, urinary incontinence and minimally invasive management of upper tract urinary obstructions and biliary obstructions. In 2014 Dr. Berent’s daughter was diagnosed with a rare non-degenerative neurogenetic disorder called Angelman syndrome. In October of 2015 she joined to Board of Directors as a Scientific Director for the Foundation for Angelman Syndrome Therapeutics (FAST), and in March of 2016 became the Chief Science Officer for the Foundation. Dr. Berent helped to spearhead the development of a pre-competitive biomarker and outcome measure consortium in order to bring patient focused outcome measures forward for human clinical trials (Angelman Syndrome Biomarker and Outcome Measure Consortium-ABOM) and Co-Founded the International Angelman Syndrome Research Council (INSYNC). Through FAST, Dr. Berent collaborated with a consortium of scientists to encourage translational research opportunities, in order to help bring novel genetic therapies forward toward human clinical trials. Through this work, with the foundation, Dr. Berent co-founded GeneTx Biotherapeutics, a company singularly focused to advance an antisense oligonucleotide (ASO) therapy through IND enabling studies and a phase 1/2 clinical trial. Dr. Berent currently serves as the Chief Operating Officer of GeneTx Biotherapeutics, who partnered with Ultragenyx Pharmaceuticals in August of 2019. The Phase 1/2 clinical trial started enrolling patients in February 2020 as the first intrathecally delivered ASO for Angelman syndrome, a study of safety and tolerability of GTX-102. 

Dr. Allyson Berent is a veterinary internal medicine specialist who serves as the Director of Interventional Endoscopy Services

Elizabeth Berry-Kravis M.D., Ph.D.

Elizabeth Berry-Kravis MD, PhD is a Professor of Pediatrics, Neurological Sciences, and Biochemistry at Rush University Medical Center in Chicago. She established the Fragile X Clinic and Research Program in 1991, through which she provides care to over 700 patients with fragile X syndrome (FXS). She has studied medical issues, epilepsy and psychopharmacology in FXS, and has been a leader in translational research in FXS including development of outcome measures and biomarkers, natural history studies, newborn screening, and particularly clinical trials of new targeted treatments in FXS, and her laboratory studies the cellular role of fragile X mental retardation protein (FMRP), relationship between FMRP and clinical function, and optimization of genetic testing methods. More recently she has expanded clinical and translational work to other neurodevelopmental disorders and genetic neurodegenerative diseases including autism spectrum disorders, Phelan McDermid syndrome, Rett syndrome, Angelman syndrome, Niemann-Pick type C, Battens disease, pantothenate kinase-associated neurodegeneration, and creatine transporter deficiency. She has received the NFXF Jarrett Cole Clinical Award, FRAXA Champion Award, NFXF William and Enid Rosen Research Award, March of Dimes Jonas Salk Research Award, American Academy of Neurology Sidney Carter Award in Child Neurology and John Merck Fund Sparkplug Award.

Geraldine Bliss, M.S. 

Geraldine Bliss is the president and co-founder of CureSHANK, a nonprofit organization with the goal of accelerating drug development in Phelan-McDermid Syndrome  (PMS) and related SHANK disorders.  She served on the Phelan-McDermid Syndrome Foundation’s board of directors for two years and as its Research Support Committee chairperson for seven years. In that role she chaired the first scientific strategic planning initiative, successfully applied for grants to further PMS research support initiatives, organized four scientific symposia (2011, 2012, 2014, and 2018), a Banbury meeting (2013), multiple workshops and think-tanks on PMS, the Phelan-McPosium (2016, 2018), family conference research sessions (2010, 2012, and 2014), and established the PMS resource repository partnerships with CIRM, Autism BrainNet, and the NIMH, among other accomplishments. She has served as a lay reviewer for the FDA.  Geraldine has a bachelor’s degree from Trinity University and a master’s in human factors (health and human performance) from the University of Houston. Geraldine’s personal mission is to eventually have cures for PMS. Geraldine and her husband, Brad, of Houston, have two sons, Charles, 22, and Nathan, 20. Charles has PMS caused by a partial deletion of the SHANK3 gene.  

David Cella 

David Cella is the Ralph Seal Paffenbarger Professor of Health Care Studies and Chair of the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine. After receiving his PhD in Clinical Psychology from Loyola University of Chicago in 1984, he completed fellowships at Cornell University Medical College and Memorial Sloan-Kettering Cancer Center, and then spent 10 years at Rush Medical College, where he rose to Director of the Division of Psychosocial Oncology before joining Northwestern in 1997. 

Cella is a member of numerous scientific organizations, including the International Society for Quality of Life Research, the International Society for Pharmacoeconomic and Outcomes Research, the American Psychological Association, the Society for Behavioral Medicine, the Academy of Behavioral Medicine Research, and the American Society of Clinical Oncology. He has been recognized with the following awards: Cancer Wellness Center Inaugural Volunteer Recognition Award (1997; subsequent awards are given in his name), The Davis Family Chair of Outcomes Research (2007-2009), The International Society of Quality of Life (ISOQOL) President’s Award (2008) and two article of the year awards (2007; 2013), the American Cancer Society Trish Greene Quality of Life Award (2012), the Health Assessment Laboratory/Medical Outcomes Trust John Ware and Alvin Tarlov Career Achievement Award in Patient Reported Outcomes Measures (2014), and the National Academy of Medicine Gustav O. Lienhard Award (2016). He is also an elected member of the National Academy of Medicine (2019), named Fellow of the American Society of Clinical Oncology (2019), Thomson Reuters Highly Cited Researcher (2015-2018), and Clarivate Analytics Highly Cited Researcher (2017-2020). 

Cella has served on numerous patient reported outcomes and person centered care advisory panels, and he consults, collaborates with, or advises the following entities on person-centered measurement and applications relevant to their mission: US Food and Drug Administration, Centers for Disease Control and Prevention, National Center for Health Statistics, Centers for Medicare and Medicaid Services, The National Quality Forum, The American Cancer Society, and Cancer Care Ontario.  

Cella developed and is continually refining the Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System for outcome evaluation in patients with chronic medical conditions. He was steering committee chair and principal investigator of the statistical coordinating center for the NIH Roadmap Initiative to build a Patient Reported Outcome Measurement Information System (PROMIS). Currently, he is principal investigator of a cooperative agreement to curate and sustain PROMIS along with three other measurement systems, under the umbrella heading of HealthMeasures: A National Person Centered Assessment Resource.  

Over the past 30 years, Cella has trained over 100 PhD and MD scientists, including graduate students, postdoctoral fellows and junior faculty. His K12 training grant from the Agency for Healthcare Research and Quality enables him to pursue this passion with emerging leaders in patient-centered outcomes research. He has published more than 900 peer-reviewed articles, most of which focus on the unique impact that the patient perspective has on the evaluation of health and health care, and his Scopus h-index as of March 2021 is 139. 

Susan Dickinson, MS, CGC

Susan Dickinson, MS, CGC, AFTD Chief Executive Officer (CEO), joined AFTD in February 2008. A genetic counselor, she brings more than three decades of experience facilitating communications among lay, scientific and medical communities. Under her leadership, AFTD has expanded dramatically in scale and impact, from a $400,000 organization with a part-time staff of three to a $9 million organization with 30 full-time staff. During her tenure, AFTD has expanded programs to meet and advocate for the needs of FTD families, and invested in specific strategies to advance FTD research and drug development, including two multi-year, multi-million dollar research initiatives targeting FTD diagnosis and treatment. Ms. Dickinson also serves on the Advisory Council for the National Institute for Neurological Disorders and Stroke.  She holds an MS in genetic counseling from Arcadia University and BA in biology and psychology from Swarthmore College. 

Ray Dorsey, M.D.

Dr. Ray Dorsey is the David M. Levy Professor of Neurology and Director of the Center for Health + Technology at the University of Rochester. The Center seeks to provide care and research opportunities to anyone anywhere.  Ray and his colleagues have written Ending Parkinson’s Disease, a book that provides a prescription for ending this debilitating condition. 

Ray previously directed the movement disorders division and neurology telemedicine at Johns Hopkins and worked as a consultant for McKinsey & Company.  His research has been published in leading medical, neurology, and economic journals and has been featured on National Public Radio, in The New York Times, and in The Wall Street Journal.  In 2015, the White House recognized him as a “Champion for Change” for Parkinson’s disease.  

Paul Gross 

Paul Gross is a driving force in accelerating clinical and translational research in neuroscience for cerebral palsy and hydrocephalus.  He is the founder and chair of the Cerebral Palsy Research Network – a twenty-eight center effort in North American to conduct high quality clinical research for CP – and an adjunct Associate Professor in the Department of Population Health Sciences at the University of Utah.  He is the co-founder of the Hydrocephalus Clinical Research Network and the Hydrocephalus Association’s Network for Discovery Science.  He spent four years as an advisor to the National Institute of Neurological Disorders and Stroke. Prior to ramping up his focus on advancing medical research, he was CEO of a web startup, a Senior Vice President with the Microsoft Corporation and with Borland International.  In his personal life, he is married and the father of two children, one of whom has hydrocephalus and cerebral palsy.  He is also an avid mountain biker.

Janet L. Hieshetter

Janet Hieshetter serves as the Executive Director of the Dystonia Medical Research Foundation (DMRF). She joined the DMRF in November 20104. Ms. Hieshetter serves on the National Institute of Neurological Diseases and Stroke Advisory Council and also serves as the Chairman of the Board for the American Brain Coalition. She also served on the Illinois Women’s Health Task Force, Massachusetts Bone Health Task Force, Tennessee’s Task Force on Bone Health, The Texas Task Force on Women’s Health and the Pennsylvania Task Force on Women’s Health. Ms. Hieshetter is a graduate of Kalamazoo College and lives in Chicago, IL.

Laura Lee Johnson, Ph.D. 

Laura Lee Johnson, Ph.D. is a division director in the Office of Biostatistics at the U.S. Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER).  Her division supports a wide variety of therapeutic areas many of which rely on less traditional methods to assess evidence.  She also works across FDA on patient focused drug development (PFDD), rare disease initiatives, COVID-19, and master protocol programs.  Prior to working at the FDA, Dr. Johnson spent over a decade at the U.S. National Institutes of Health working on and overseeing clinical research and research support programs including the CTSAs, PROMIS, and NIH Collaboratory.  She worked at both NCI and what is now known as NCCIH.  Dr. Johnson co-directs the NIH Principles and Practice of Clinical Research course.

Roger Lamoureux

Roger is a native of Lowell, Massachusetts, and holds a Master of Divinity degree from Weston School of Theology in Cambridge, MA.  Over the past 10 years, Roger has served in a number of roles at Adelphi Values, ranging from project administrative tasks to conducting one-on-one interviews with clinicians and patients.  In his current role as a Research Manager, Roger oversees research activities for multiple projects in various therapeutic areas, coordinates the work of research teams, provides a first review of qualitative analyses and reports, and tracks project timelines and budgets.  

Nathalie L. Maitre, M.D., Ph.D.

Dr. Maitre is a board-certified neonatologist and research investigator with a focus on neurodevelopment in high-risk newborns and rehabilitation of long-term disabilities. She is the Director of the NICU Follow-up Program and the Medical Director of NICU Developmental Therapies at Nationwide Children’s Hospital. Her research emphasizes the development of quantitative measures of neural function in infants to allow the rational design and testing of parent-based and technology-assisted strategies. A career development award from the NICHD allowed her to elucidate mechanisms through which the NICU environment contributes to cortical sensory processing differences in hospitalized neonates and their neurobehavioral outcomes.

For the past 8 years Dr. Maitre has conducted multidisciplinary research with neuroscientists, engineers and therapists in neurophysiology of NICU infants and rehabilitation. She now leads NIH- and foundation-funded studies (AACPDM Pedal-With-Pete, American Heart Association and Cerebral Palsy Alliance) of parent-driven sensory motor interventions such as constraint and bimanual movement therapy, and pacifier activated music players. She also continues to work with engineering and mathematical modeling teams in the US, Switzerland, and India to develop new methodologies for brain based assessment and therapy in infants and young children. She is a member of the international IMPACT for Cerebral Palsy workgroup.

Dr. Maitre mentors undergraduate, graduate, postdoctoral trainees in rehabilitative therapies, developmental medicine, neonatology, and engineering, who are interested in developing a career in the neuroscience of infant rehabilitation.

Mary Anne Meskis

Mary Anne was a founding member of the Dravet Syndrome Foundation (DSF), stepping off of the Board to take the position of Executive Director in 2012. Prior to taking the position of Executive Director, she has owned and managed several small businesses in the private sector for over 25 years. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009.  

While under her direction, DSF has placed a focus on patient community engagement and education. DSF has worked with multiple industry partners on several clinical trials since 2016, including some that are currently underway. These trials have resulted in three FDA-approved medications for the treatment of Dravet syndrome since 2018.  

In addition to her role at DSF she currently serves on several epilepsy working groups and industry advisory panels. She currently resides in North Carolina with her husband and the youngest of her three children, Elliot, who has Dravet syndrome.   

Anne Pariser, M.D.

Anne Pariser, M.D. is the director of the Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences (NCATS) NIH. ORDR is dedicated to accelerating rare diseases research to benefit patients, through rare diseases programs such as the Rare Diseases Clinical Research Network, Genetic and Rare Diseases Information Center (GARD), and the NCATS Toolkit for Patient-focused Therapy Development. Important translational science research initiatives for rare diseases at ORDR include establishing best practices and tools for good quality natural history studies, data standards and sharing initiatives, the development of diagnostic support tools, and rare diseases therapeutics development, as well as translational and basic science research grants and collaborative programs.  Dr. Pariser came to NCATS in 2017, and before this, she worked for 16 years at the US Food and Drug Administration Center for Drug Evaluation and Research, where she founded the Rare Diseases Program in FDA CDER’s Office of New Drugs in 2010 and served as a Medical Officer and Team Leader for rare diseases drug and biologics product development, review and regulation. Dr. Pariser has 20 years of experience in rare diseases research, and her current research interests include “many diseases at a time” research approaches, such as platforms for gene therapies and other rare disease product development, and informatics approaches to diagnosis.

Dominique Pichard, Ph.D.

Dr. Pichard has focused her career on patients with rare disorders and complex medical needs. Prior to joining the International Rett Syndrome (IRSF), Dr. Pichard held a joint appointment in the Pediatric Oncology Branch and the Dermatology Branch at the National Institutes of Health (NIH), where she worked as a clinical investigator. In addition to caring for patients with complex medical needs, her research focused on identifying new treatments and improving clinical trial design for rare diseases. She was a member of the Director’s Council and co-Chaired the Cutaneous Neurofibroma group of Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS), an international effort to develop standardized outcome measures and trial design for clinical trials. Dr. Pichard received her Doctor of Medicine from Georgetown University. She was in a combined Internal Medicine-Pediatrics Residency at the University of Minnesota followed by a Dermatology Residency at Georgetown University. She then completed a Clinical Research Fellowship at the NIH. 

As the parent of a daughter with Rett syndrome, Dr. Pichard brings a unique passion to her role as Chief Science Officer and is committed to identifying research breakthroughs that lead to treatments and ultimately a cure for Rett syndrome. She serves as CSO so that one day our children can do more and struggle less with the challenges of Rett syndrome. 

Dr. Pichard has focused her career on patients with rare disorders and complex medical needs. Prior to joining the International

Nina Schor, M.D., Ph.D.

Nina F. Schor, MD, PhD former Deputy Director of the NINDS and a Senior Faculty Associate at the University of Rochester.  Dr. Schor graduated cum laude from Yale University with a B.S. degree in Molecular Biophysics and Biochemistry and as a Scholar of the House in Chemistry Research in 1975. She received her PhD in Medical Biochemistry from Rockefeller University and the laboratory of Dr. Anthony Cerami in 1980 and her MD from Cornell University Medical College in 1981.  Dr. Schor pursued residency training in Pediatrics at Boston Children’s Hospital (1981-1983) under Dr. Mary Ellen Avery and Child Neurology at the Longwood Area-Harvard Neurology Program (1983-1986) under Dr. Charles Barlow. During residency, she also pursued a postdoctoral fellowship in the laboratory of Dr. Manfred Karnofsky at Harvard. During this time, she began her studies of neuroblastoma, aimed at understanding the neurobiology of this tumor and exploiting this understanding to design and test in preclinical models novel strategies for the therapy of chemoresistant neuroblastoma.  For the next 20 years, Dr. Schor rose through the academic and administrative ranks at the University of Pittsburgh, ultimately becoming the Carol Ann Craumer Professor of Pediatric Research, Chief of the Division of Child Neurology in the Department of Pediatrics, and Associate Dean for Medical Student Research at the medical school. In 2006, Dr. Schor became the William H. Eilinger Chair of the Department of Pediatrics, and Pediatrician-in-Chief of the Golisano Children’s Hospital at the University of Rochester, posts she held until January 2018, when she became Deputy Director of the NINDS.

Monica Weldon

In November of 2012, Monica’s twin son, Beckett, was the first to be diagnosed at Texas Children’s Genetics Clinic with the gene mutation SYNGAP1. When Beckett was 4 months old, we noticed he was not meeting the same milestones as his twin sister. We then began a journey to find answers to help our son. She began to blog about his progress & this led to building a community of parents & caregivers & a strong support group. She is the Founder, President/CEO of Bridge the Gap – SYNGAP Education & Research Foundation. It is her passion to help support these families by raising awareness & creating a strong foundation that will accelerate a path to better therapies. 

She retired in 2016 after 23 years in education teaching secondary science. Her new focus is on building the programs & mission of Bridge the Gap – SYNGAP Education and Research Foundation. She is the Primary Investigator on the SYNGAP1 (MRD5) Registry & Natural History Study. She is a life member of the Worldwide Association of Female Professionals, DIA 2016 Patient Scholar, a member of the first-class of 2017 Illumina Ambassadors established in the United States and a member of Women in Bio – Capital DC and Texas Chapters.  

In addition to leading the foundation, she is an author, public speaker, consultant on rare disease business strategies & advocates for rare disease legislation at both the federal & state levels. Several of her authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, The Journal of Pediatrics and Value in Health Journal. She is also an internationally known editorial contributor and key opinion leader for Pharma Boardroom, London. She has authored a book about her son Beckett’s diagnostic journey called “Slow Moving Stream – My Special Boy”.  

She is a graduate from East Texas Baptist University with a Bachelor’s of Science in Biology/Psychology (1991) & Secondary Certification in Education (1995). She is a Northwestern University Pritzker Law School candidate earning her Master in Science Law. She has five beautiful children, Haleigh (29), Taylor, USMC (26), Sawyer (24), & the twins Beckett & Pyper (13). A Global Genes 2015 & 2016 RARE Champion in Advocacy Award nominee & Wego Health Awards Nominee for years 2015, 2017, 2018, & 2019, 2020 and chosen as a Global Shakers Rare Disease Awardee 2020.  

In November of 2012, Monica’s twin son, Beckett, was the first to be diagnosed at Texas Children’s Genetics

Samantha White, Ph.D.

Dr. Samantha White, former Chief of the Scientific and Public Engagement Branch in the Office of Neuroscience Communications and Engagement (ONCE), where she helps ONCE efforts to provide a seamless flow of information on NINDS research advances and initiatives to various stakeholders including scientific and academic communities, as well as policy-makers, patients, and the public. ONCE manages the NINDS and BRAIN Initiative websites, an important tool in broadly conveying this information. Specifically, Dr. White collaborates with leadership, policy, communications, programmatic, and administrative staff across NINDS and the other 9 participating BRAIN Institutes and Centers, as well as the other federal and non-federal organizations that contribute to the BRAIN Initiative. In addition to coordinating meetings, workshops, and scientific conferences like the annual BRAIN Investigators Meeting and the NIH BRAIN Multi-Council Working Group, she helps manage websites related to NINDS and BRAIN, and develops communications and outreach materials about the progress of BRAIN and other NINDS-sponsored research. In ONCE, Dr. White also supports the NINDS Office of the Director, collaborating with the communications and policy offices to prepare materials and presentations related all scientific programs aligned with the NINDS mission. Dr. White began working at NIH as an AAAS Science and Technology Policy fellow and received her Ph.D. in neuroscience from the University of Pennsylvania and her B.S. in neuroscience and behavioral biology from Emory University. She previously worked as a Science Policy Fellow at Research!America, and she was also the program director for Emerging Leaders in Science and Society, a pilot program hosted by the American Association for the Advancement of Science.

Susan Schneider Williams

Fine Art Artist and Advocate for Lewy Body Disease Research 

In 2014, when her husband Robin Williams died from Lewy body disease (LBD), artist Susan Schneider Williams set out to raise awareness about this devastating yet little known brain disease. Since receiving her husband’s diagnosis after his death, only apparent in autopsy, she has become a prominent advocate and voice for LBD and brain disease research.  

Schneider Williams has served on the board at the American Brain Foundation (ABF) since 2016 and is currently their Vice Chair. She spearheaded the ABF’s groundbreaking 2021 research award targeted at the discovery of an accurate method of diagnosing Lewy body dementia. This $3 million multi-year award was created in partnership with the Alzheimer’s Association, the Michael J. Fox Foundation for Parkinson’s Research and the American Academy of Neurology (AAN). 

Schneider Williams participated in the 2020 released documentary film Robin’s Wish, centered around Robin’s final years and his experience with LBD. She conceived of the idea for an educational version of the film called SPARK, now available to help aid institutions in raising awareness and funds for solving LBD. 

Schneider Williams authored the editorial, “The terrorist inside my husband’s brain,” for the American Academy of Neurology’s Neurology Journal. To date it is the #1 most read article of all time in Neurology. She was presented with the American Brain Foundation’s Commitment to Cures Award in 2016 in recognition of her advocacy. She has spoken at academic institutions and private research corporations.  

Schneider Williams has also lobbied in Washington, DC with the AAN, Michael J. Fox Foundation, and others for better diagnostics, increased funding, and support for researchers, doctors and clinicians. She has become a leading spokesperson for Lewy body dementia appearing on national television including, The Today Show, Good Morning America and CBS This Morning.  

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