2023 NINDS Nonprofit Forum

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The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to an 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.

The 2023 NINDS Nonprofit Forum was a hybrid event and took place on July 24-25, 2023. It was hosted in-person at The Natcher Conference Center, NIH Main Campus, Bethesda, MD, and virtually via Zoom Webinar.

Agenda

Presenters

Ron Bartek, M.S.

Co-founder/President, Friedreich’s Ataxia Research Alliance; Board of Directors/past Chairman, National Organization for Rare Disorders; Vice President & Board of Directors, Alliance for a Stronger FDA, Board of Directors, Alliance for Regenerative Medicine; Member, NIH/NCATS National Advisory Council; Vice Chair, NCATS Cures Acceleration Network Review Board; member, FDA/CTTI Patient Engagement Collaborative; 4-year member, NIH Neurological Institute National Advisory Council; former partner/president, business development/government affairs firm; twenty years in federal executive and legislative branches in defense, foreign policy and intelligence (six years on House Armed Services Committee staff; four years at U.S. State Department, one year on U.S. Delegation to Intermediate- Range Nuclear Forces Treaty talks, Geneva; six years as CIA analyst, including a year as Intelligence Community representative to U.S. arms control committees); after graduation from United States Military Academy, West Point, four years as Army officer, as company commander in Korea and Infantry and Military Intelligence officer in Vietnam; Master’s Degree, Russian Area Studies – Georgetown University.

Naomi Booker, Ph.D.

Ms. Naomi Booker is a Health Program Specialist, within the Division of Clinical Research, Office of Global Health and Health Disparities. She serves as a liaison, supports the programmatic activities of the office, and assists with the implementation of the health equity strategic plans for the institute. Prior to joining NINDS, Naomi served as a Patient Care Coordinator, where she gained experience working with family members, health care providers, and community-based organizations to develop individualized plans of care, conduct assessments, and evaluation of skilled in-home nursing care for underserved populations suffering from Strokes, Parkinson’s Disease, Alzheimer’s disease, and other neurological diseases.

Naomi obtained her Master's in Public Health from the University of New England in Maine. Further, her practicum focused on the effectiveness of early detection of postpartum depression risk through identifying the best screening tools and treatment strategies among racial and ethnic minority adolescents population within underserved communities in Washington, D.C. Her areas of interest center around advancing health equity research, analysis, and practice in underrepresented and vulnerable populations. Also, she has knowledge and experience in coordinating efforts to address health disparities, and social determinants of health, and promote equitable health outcomes in communities.

P.J. Brooks, Ph.D.

Philip J. (P.J.) Brooks, Ph.D., is the deputy director of NCATS’ Division of Rare Diseases Research Innovation. Brooks represents NCATS in the NIH-wide Gene Therapy Working Group, the Regenerative Medicine Innovation Project and the International Rare Diseases Research Consortium (IRDiRC). He also is the working group co-coordinator for the NIH Common Fund program on Somatic Cell Genome Editing, one of the leaders of the Platform Vector Gene Therapy (PaVe-GT) pilot project and the co-chair of the Bespoke Gene Therapy Consortium. 

In May 2022, Brooks was selected as the recipient of the 2022 Sonia Skarlatos Public Service Award by the American Society of Gene & Cell Therapy for consistently fostering and enhancing the field of gene and cell therapy.

Brooks received his doctorate in neurobiology from The University of North Carolina at Chapel Hill. After completing a postdoctoral fellowship at The Rockefeller University, he became an investigator in the NIH intramural program, where he developed an internationally recognized research program focused on two distinct areas: the molecular basis of alcohol-related cancer, and rare neurologic diseases resulting from defective DNA repair, including xeroderma pigmentosum, Cockayne syndrome and Fanconi anemia.

Vicky Cattani, Ph.D.

Vicky Cattani, Ph.D., joined the NIA Office of Strategic Extramural Programs (OSEP) as Program Officer in February 2024. In this role, she is responsible for promoting and supporting small businesses seeking SBIR/STTR funding in the age tech space. In addition, she helps small business awardees advance toward commercialization by coordinating and supporting programs to expose awardees to investors, strategic partners, and key stakeholders. 

Before joining NIA, Vicky served as the Associate Director of Research Programs at the Parkinson’s Foundation, where she oversaw a diverse portfolio aimed at understanding the mechanisms and advancing a cure for Parkinson’s disease. Prior to the Foundation, Vicky was a Senior Scientific Consultant at Eva Garland Consulting. As such, she helped hundreds of startups and biotech companies to secure millions of dollars in non-dilutive funding towards product development and commercialization. Vicky has ample experience in delivering training seminars and workshops on non-dilutive funding application strategies, and she has served as a grant reviewer for various local and federal agencies.

Vicky earned her Ph.D. in Biology from the University of Rochester, and subsequently served as a Charles H. Revson Senior Postdoctoral Fellow at the Genomics and Systems Biology Center at New York University.

Penny Dacks, Ph.D.

Penny Dacks, Ph.D. is Senior Director of Scientific Initiatives at AFTD where she leads strategy for research initiatives to fund research, recruit and retain talent, advance collaboration, and engage the community with lived experience. On behalf of AFTD, she serves as President of the FTD Disorders Registry LLC, responsible for partnerships and sustainability of this organization affiliate. Previously, she worked at the American Epilepsy Society, overseeing mission-related programs in research, medical education, and clinical activities, and the Alzheimer’s Drug Discovery Foundation, leading development of CognitiveVitality.org and the Aging & Alzheimer’s Prevention Program to source and evaluate potential therapies. She trained in neuroscience with a PhD and postdoctoral fellowship at the University of Arizona and the Icahn School of Medicine, Mount Sinai.

Aliza Fink, D.Sc.

Aliza Fink, D.Sc. is the Director of Research Programs at the National Organization for Rare Disorders (NORD®). Aliza joined NORD in 2021 and leads its research programs. As the Director of Research Programs at NORD, Aliza oversees the strategic development, growth, and implementation of NORD’s research and scientific activities, ensuring that NORD drives innovation and advancement while supporting the rare community with evidenceinformed programs. Prior to joining NORD, Aliza was most recently Senior Director of Real-World Research at Cystic Fibrosis Foundation (CFF). She has also served as the Director of Epidemiology at CFF, as well as an epidemiologist at ICF International Inc, working as a contractor to the Centers for Disease Prevention and Control (CDC) and state departments of health. Earlier in her career, Aliza was a project manager at the Boston University School of Public Health and a research assistant at the Boston Medical Center, Department of Family Medicine. Aliza has a BSc degree in toxicology and MSc in epidemiology with a collaborative program in toxicology from the University of Toronto. She completed her DSc in wpidemiology at Boston University School of Public Health. Aliza is a renowned researcher and author, with publications on a variety of rare diseases and health systems. Aliza loves using data to tell stories that help us understand the world around us.

A. Reghan Foley, M.D.

Dr. Reghan Foley is a Senior Research Physician within the Neuromuscular and Neurogenetic Disorders of Childhood Section, Neurogenetics Branch.  She graduated from Georgetown University College of Arts and Sciences with a Bachelor of Science in Languages and obtained her M.D. degree from Georgetown University School of Medicine.  Dr. Foley completed her Pediatric Internship and Residency training at Miami Children’s Hospital and completed her Child Neurology and Neurology training at the Children’s Hospital of Philadelphia (CHOP) and the Hospital of the University of Pennsylvania.  She completed a Fellowship in Pediatric Neuromuscular Disease under the mentorship of Dr. Carsten Bönnemann at the Children’s Hospital of Philadelphia, where she trained in performing and interpreting muscle ultrasound and was involved in pediatric neuromuscular clinical trials.  Dr. Foley then completed a Clinical Research Fellowship under the mentorship of Professor Francesco Muntoni at the Dubowitz Neuromuscular Centre, University College London Institute of Child Health and the Great Ormond Street Hospital for Children, London, UK.  She completed an M.D. Research degree [MD(Res)] at the University College London in which the focus of her research and topic of her thesis was the Collagen VI-related muscular dystrophies.  

During her fellowship in London, Dr. Foley was also involved in gene discovery efforts in the neuromuscular diseases as part of the Rare Diseases Working Group of the UK10K, an exome sequencing project in collaboration with the Wellcome Sanger Institute, Cambridge, UK.  Dr. Foley then worked as a Neuromuscular Specialist at the Children’s University Hospital Temple Street, Dublin, Ireland where she linked diagnostic efforts in genetically uncharacterized patients with exome sequencing efforts at the University College London.  

Dr. Foley joined the Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS in 2015.  Together with Dr. Carsten Bönnemann, she oversees the section's clinical research efforts.  The Neuromuscular and Neurogenetic Disorders of Childhood Section sees patients with congenital onset neuromuscular conditions who are genetically undiagnosed, follows children diagnosed with rare congenital onset neuromuscular conditions via various natural history studies, and enrolls patients who are eligible to participate in the section's active clinical trials.  Dr. Foley has served as an investigator for the section’s Phase 1 clinical trials in the COL6-related dystrophies, LAMA2-related dystrophies, MTM1-related myopathy and giant axonal neuropathy.

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.  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.

Maria Kefalas

Maria Kefalas studied economics at Wellesley College and earned her M.A. and Ph.D. in sociology from the University of Chicago.  She worked at the Brookings Institution, held a post-doctoral fellowship at the University of Pennsylvania, and taught at Barnard College (Columbia University) before joining the faculty of Saint Joseph’s University in Philadelphia. Kefalas is the author of numerous books and articles, and has received grants from the William T. Grant Foundation, the MacArthur Foundation, and the Department of Justice. Maria Kefalas became a patient advocate and philanthropist for gene therapy after the diagnosis of her youngest child suffered from a fatal degenerative neurological disease called metachromatic leukodystrophy (or MLD).  Leukodystrophies are in the same family as Tay-Sachs and Canavan diseases. 

Melinda Kennedy, M.H.A.

Melissa Kennedy joined IRSF as Chief Executive Officer in 2017. With a distinguished career in healthcare management and strategic planning, Melissa has been instrumental in driving the Foundation’s mission to advance research and improve the lives of those affected by Rett syndrome.

Melissa co-founded Healthcare Research Systems in 1990, a healthcare consumer survey research company, and served as Executive Vice President. Under her leadership, the company executed many large-scale national research projects including the HEDIS 2.0 pilot project and patient satisfaction studies for Kaiser Permanente. The company saw tremendous growth during her eight-year tenure, growing to more than 150 employees before being acquired by the National Research Corporation.

During her extensive career, Melissa has also directed strategic initiatives focused on cardiovascular care and oncology at the University of Rochester Medical Center; provided consulting services for national healthcare philanthropies and regional foundations; and led strategic oversight for collaborative programs at The Health Collaborative of Greater Cincinnati. There, she served as project director for the Robert Wood Johnson Foundation’s Cincinnati Aligning Forces for Quality project and earned an Exemplary Service Award from the Ohio Senate in 2013. Prior to joining IRSF, Melissa spent 3 years as the Executive Director of TriHealth Women’s Services, the largest provider of care to women and infants in the greater Cincinnati area.

Under Melissa’s leadership, IRSF has worked to accelerate global Rett syndrome research, with more than $58 million funded by the Foundation to date, while empowering families with vital care resources and a supportive community. Melissa spearheaded the establishment of a Center of Excellence clinic network, now 21-strong, to provide best-in-class care, participate in clinical trials, and contribute to IRSF’s Rett Syndrome Registry that will increase understanding of the rare disease. She has established partnerships with industry and biopharmaceutical companies to advance clinical trials aimed at finding treatments and a cure for Rett syndrome. Additionally, Melissa is a dedicated advocate at the state and federal levels, striving for increased Rett research funding and ensuring treatments are accessible and affordable.

Melissa holds a BA in Chemistry from Lake Forest College and an MHA from The Ohio State University. She currently resides in Michigan with her husband, John, and is the proud mother of two adult sons, Patrick and Will.

Travis Lewis, Ph.D.

Dr. Travis Lewis is the Executive Medical Director at Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly and Company. He supports clinical development of various genetic therapy programs from early phase proof of concept through clinical confirmation. As a neurologist, he has strong interest in neurodegenerative disease with a focus on movement disorders. He completed Ph.D. training designing viral vector platforms for gene therapy and has continued to passionately pursue novel methods of advanced therapeutics throughout his career.

Timothy Miller, M.D., Ph.D.

Dr. Timothy Miller, M.D., Ph.D. is Vice Chair of Research for the department of Neurology, co-director of the ALS Center and the David Clayson Professor of Neurology at Washington University School of Medicine in St. Louis. His group focuses on developing novel therapies for neurodegenerative diseases, including ALS and tauopathies. Dr. Miller has pioneered work with antisense oligonucleotides (ASOs) and has led successful ASO clinical trials in SOD1-related ALS and developed an ASO therapy for tauopathies. His work has received several distinguished awards for innovation and Dr. Miller was elected to the National Academy of Medicine in 2023.

Stephanie J. Monroe

Stephanie J. Monroe is Vice President and Senior Advisor of Health Equity and Access at UsAgainstAlzheimer’s, a national advocacy organization based in Washington, D.C. She was the founding director of AfricanAmericansAgainstAlzheimer’s which was the first national network created specifically to respond to Alzheimer’s disease’s disparate impact on African Americans. By working nationally, locally, and through strategic partnerships, Ms. Monroe works to raise awareness of the impact of Alzheimer’s health disparities on communities of color and women, the need for greater minority participation in clinical trials to find better treatments, diagnostics and hopefully a cure, and the importance of all communities, especially those most at risk to begin to focus on brain health and adopt risk reduction strategies that promote brain health across the lifespan.   
 
An attorney with three decades of federal public policy experience. Stephanie is a former Assistant Secretary for Civil Rights at the U.S. Department of Education.  Prior to serving in that position, she ended a 25-year career on Capitol Hill after holding several key staff positions in the United States Congress, including Chief Counsel of the U.S. Senate Committee on Health, Education, Labor, and Pensions, as well as Staff Director of the Senate Subcommittee on Children and Families.  Stephanie serves on several Boards of Directors as well as an advisor to numerous academic centers, industry partners, federal agencies, and others on issues to ensure full equal opportunity to participate in and benefit from all that America has to offer.  

Jill A. Morris

Dr. Jill Morris joined NINDS in 2011 and is a Program Director in the Division of Neuroscience at NINDS. She oversees basic grants in technology development for gene-targeted therapies, glia biology and neural tube development. She is also responsible for disease grants in hydrocephalus, neural tube defects, Tourette syndrome and multiple rare neurological disorders. Furthermore, Dr. Morris is the NINDS Liaison for the Rare Disease Clinical Research Network (RDCRN) an initiative of the Office of Rare Disease Research (ORDR), NCATS in collaboration with NINDS. NINDS co-funds 11 of the 20 consortia as well as the Data Management Coordinating Center (DMCC).  She is also the lead of the extramural Trans-NIH Gene-Targeted Therapies for Nervous System Disorders Working Group (GeTTNSD). In addition, she is a working group member of URGenT:  The NINDS Ultra-Rare Gene-based Therapy Network. 
 
Prior to coming to the NIH, Dr. Morris was an Assistant Professor in the Department of Pediatrics in the Feinberg School of Medicine at Northwestern University. Her laboratory studied the function of DISC1, a schizophrenia susceptibility gene. Prior to NIH, she was Senior Research Biologist in the Department of Neuroscience at Merck Research Laboratories where she directed research projects relating to bipolar affective disorder, schizophrenia, Alzheimer's disease and Parkinson's disease. Prior to Merck, she was a Senior Staff Fellow in the Unit of Molecular Neurogenetics at the National Institutes of Health where her research led to the identification and characterization of the gene responsible for the rare autosomal recessive neurodegenerative disorder called Niemann-Pick type C disease. Her background in gene therapy is from her graduate studies at the University of Minnesota.

Debra Niehoff, Ph.D.

Debra Niehoff, PhD, is the Director of Research & Grants for AFTD, where she oversees AFTD's research portfolio and coordinates networking, training, and research funding programs.

Tony Pearson, J.D., M.P.H.

Tony Pearson leads the strategic trial design and delivery to ensure appropriate representation of diverse participants and investigators in clinical trials across all Lilly therapeutic areas.

Tony joined Lilly in 2019 as an Associate Director in Trial Capabilities, leading teams responsible for site start up. Tony then supported Lilly’s Diabetes Corporate Affairs team, where he worked to address key barriers to care and optimal health outcomes by engaging influential policy, advocacy, patient, and government stakeholders.   

Prior to his roles at Lilly, Tony served in government affairs for Indiana University (IU) Health, supporting hospital system and federally qualified health center priorities. He also served as an Associate General Counsel, supporting the transactional and regulatory needs of IU Health’s multi-specialty physician practice group before leading gastroenterology and hepatology operations as a Service Line Administrator.

Tony earned a Bachelor of Science and Master of Public Health, with a concentration in Health Policy and Management, from Florida Agricultural and Mechanical University. He earned his Doctor of Jurisprudence from Indiana University. Tony is also a Veteran, achieving the rank of Lieutenant Commander, serving as a health care administrator, and supporting plans, operations, and medical intelligence for Naval Special Warfare Command.

Terry Pirovolakis

CureSPG50, a Canadian charity, was founded by Terry Pirovolakis and his wife Georgia after there child received a Spastic Paraplegia Type 50 (SPG50) diagnosis in April 2019. By obtaining $4.5 million from generous donors and unwavering community support, Mr. Pirovolakis joined forces with academic sponsors to successfully demonstrate efficacy in both cells and mice, as well as preliminary safety in mice. He then assembled a team of experts to develop a tox vector, carry out toxicology studies in rats and NHPs, produce clinical-grade drugs, and, within three years, treat his own child through a Canadian CTA. The team proceeded to submit a Phase I/II application to the FDA, treating a second patient and anticipating a third to be treated by the time this proposal is assessed.

Vasiliki (Vaso) Rahimzadeh, Ph.D.

Vasiliki (Vaso) Rahimzadeh is an Assistant Professor with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. My research explores ethical and regulatory issues associated with sharing genomic data more widely, efficiently and securely across computing systems. I am interested in how the scientific community can harness the power of big data to advance medicine in ways that respect the privacy interests of individuals and their communities about whom this data relates.

After earning my Bachelor of Science in Microbial Biology from the University in California Berkeley in 2012, I pursued graduate studies at McGill University where I completed an MSc (2014), followed by a PhD (2019) in biomedical ethics. My dissertation first developed, then validated an ethical-legal framework to support responsible sharing of genomic data involving children. My work was supported by a prestigious Vanier Canada Graduate Scholarship (2016-2019) and earned me both a Governor General’s Gold Medal and Gordon A. MacLachlan Prizes for top dissertation in the biological and health sciences in Canada. I joined the Stanford Center for Biomedical Ethics as a Postdoctoral Fellow (2019-2022) with support from a National Human Genome Research Institute’s Ethical Legal and Social Implications (ELSI) Program training grant. In addition to my published research contributions in journals such as JAMA Pediatrics, American Journal of Bioethics and European Journal of Human Genetics, I am an active member of the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health where I contribute empirical policy research on harmonization and standards-development for health data sharing.

I invite you to engage with my publications and learn more about my ongoing projects.

Manish Raisinghani, M.B.B.S., Ph.D.

As Chief Executive Officer, Manish leads Target ALS toward the organization’s goal of realizing a world in which no one dies of ALS. Manish has led the Target ALS team since its founding in 2013 and has grown the organization into a significant research accelerator through an international network of scientists from academia and the pharma/biotech industry.

This growth reflects his vision and leadership, creating a robust pipeline of research and drug discovery through the organization’s hallmark Target ALS Innovation Ecosystem. This ecosystem incentivizes new research collaborations with grants to multi-investigator research consortia and expands access to valuable research resources.

Prior to Target ALS, Manish served in senior scientific and executive roles at Columbia University, Sigma-Aldrich, and Taconic Biosciences, including over 10 years focused in neuroscience. He is a member of the Society for Neuroscience and has published dozens of research articles.

Manish earned his Ph.D. from Southern Illinois University and his Bachelor of Medicine, Bachelor of Surgery degree from the Seth G.S. Medical College and KEM Hospital in Mumbai, India.

Gopa Raychaudhuri, Ph.D.

Gopa Raychaudhuri is the Associate Director for Special Programs in the Office of the Director in FDA’s Center for Biologics Evaluation and Research (CBER). Dr. Raychaudhuri is CBER’s liaison to the World Health Organization (WHO) where she oversees areas of strategic interest and CBER’s scientific collaborations with the WHO. Additionally, she manages CBER’s Individualized Therapeutics Program which focuses on facilitating development of bespoke gene therapies for ultra-rare diseases. Dr. Raychaudhuri received Bachelor of Science and Master of Science degrees in Biochemistry from the University of Toronto and a PhD in Microbiology from the University of Virginia. She did her post- doctoral training at NIAID/NIH where her research was on vaccine development. Dr. Raychaudhuri joined the Office of Vaccines Research and Review in FDA/CBER as a scientific reviewer in 1999 and has been in her current position since 2010.

Cheryse Sankar, Ph.D.

As a Program Director in the Office of Global Health and Health Disparities (OGHHD), Dr. Sankar has a diverse research portfolio covering topics related to advancing health equity in pain management and health disparities in neurological disorders and stroke. 

Dr. Courtney Silverthorn, Ph.D.

Dr. Courtney Silverthorn is the Acting Director of the Technology Partnerships Office at the National Institute of Standards and Technology (NIST). With over a decade of experience in Federal technology transfer, she is currently responsible for providing leadership for TPO’s responsibilities in advancing NIST technology transfer and commercialization and the NIST SBIR program, and leading implementation of interagency technology transfer policy efforts via NIST's Return on Investment Initiative and the White House’s Lab-to-Market Cross-Agency Priority goal. She also oversees NIST-centric and agency-wide economic analysis on the impact of federal technology transfer.

Courtney is a Co-Chair of the National Science and Technology Council’s Lab-to-Market subcommittee and coordinates several Interagency working groups for tech transfer and intellectual property issues. She served as a Senior Policy Advisor to the Office of Science and Technology Policy through a detail assignment in 2018, supporting both Lab-to-Market and Citizen Science.

Courtney is a member of the Board of Directors of the Innovation Research Interchange, a world-wide network of thought leaders from large corporations, small businesses, and federal labs focusing on researching, developing and sharing best practices in innovation management, and serves as the Finance Officer on the Executive Board of the Federal Laboratory Consortium, a nationwide network of over 300 Federal laboratories focused on enabling commercialization of federally-funded technological developments.

Dr. Silverthorn earned a Ph.D. in Pharmacology from The Johns Hopkins University School of Medicine, a M.S. in Leadership and Public Policy from Washington University in St. Louis, and a B.S. in Biochemistry and Molecular Biology from Sweet Briar College. She has also earned certificates in Biotechnology Enterprise from Johns Hopkins and in Policy Strategy from the Brookings Institution.

Diane Stephenson, Ph.D.

Diane Stephenson is a neuroscientist by training with 30 years’ experience in academic neuroscience and drug discovery. In her academic career, her research focused on Amyotrophic Lateral Sclerosis (ALS) and Alzheimer’s disease; in industry, she supported identification/validation of new targets for Alzheimer’s disease, stroke and Parkinson’s disease (PD). Dr. Stephenson transitioned to industry with the hope that greater access to resources and teamwork would bring the urgently needed therapeutics to those suffering from ALS. She collaborated with pioneers of the amyloid hypothesis and led characterization of new animal and cellular models. While in industry, Dr. Stephenson developed a passion for public-private partnerships and engaged in translational research including biomarker identification and validation across multiple CNS diseases. She presently leads the Critical Path for Parkinson’s a trans-continental consortium aimed at bringing together data from around the world to enable effective delivery of treatments at early stages of PD.

Neil Thakur, Ph.D.

Neil Thakur, Ph.D. brings more than two decades of experience as a public-health expert to the fight against ALS. He serves as the Chief Mission Officer for The ALS Association, where he leads their research, care services, and advocacy programs. Before joining the Association, Dr. Thakur served in the National Institutes of Health (NIH) Office of the Director, making NIH research more impactful. He managed the world’s largest policy to make biomedical research papers publicly accessible and co-chaired the White House task force that led to the requirement that all federal science agencies adopt similar policies. He also spent a year on detail to the U.S. Senate Special Committee on Aging, focusing on effective long-term health care. Prior to his time at NIH, Dr. Thakur was Assistant Director of Health Services Research and Development at the Department of Veterans Affairs. Dr. Thakur has received numerous federal awards, including the Secretary for Health and Human Services’ award for Meritorious Service, the second-highest award that the Secretary can bestow. Dr. Thakur holds a Ph.D. in Health Policy from the Yale University School of Public Health and completed a National Institute of Mental Health (NIMH) postdoctoral fellowship in mental-health services research at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill.

Pierre R. Theodore, M.D.

Dr. Pierre R. Theodore serves as the Executive Director Health Equity at Genetech and Clinical Associate Professor of Surgery at Stanford University School of Medicine.

Louise Vetter

Louise Vetter is a mission-driven leader with more than 25 years of experience raising funds and growing health-focused nonprofits to increase care and accelerate therapeutic solutions for patients. She joins the Lupus Foundation of America after a fifteen-year tenure as President & CEO of the Huntington’s Disease Society of America (HDSA), the largest public non-profit devoted to the fight against Huntington’s disease (HD), a rare neurodegenerative condition. At HDSA, she led the expansion of the Society’s impact with new programs to remove barriers to accessing support and clinical resources, improve physician understanding, and support scientific innovation to bring new treatments to HD families.

Before HDSA, Louise served as President & CEO of the American Lung Association of New York where she oversaw statewide advocacy, education and research programs on a variety of lung health issues, including asthma, environmental health and tobacco control. Notably, she led the American Lung Association’s response to the air quality crisis following the 9-11 attack in NYC. Prior to her transition to the nonprofit field, she worked in the Healthcare practice at Fleishman Hillard Communications conducting media relations and public awareness campaigns, as well as crisis communication support to clients in the biotech and pharmaceutical industries.

Ms. Vetter currently serves on the Board of the National Health Council and is an Emeritus Board Member of the American Brain Coalition.

David Voccola

In his role as a Senior Principal and Global Strategy Lead in IQVIA’s Integrated Heath Practice, David informs IQVIA’s direct-to-patient and registry product directions, while serving as an expert consultant to health non-profits as they navigate the modern patient data landscape and explore partnerships with life sciences and others to accelerate better outcomes for their communities. He is a regular author and presenter on several topics about which he is passionate, including embracing patient-mediated access to electronic health information and leveraging patient-centric designs to reduce burden and expand inclusivity in research.

Prior to joining IQVIA in early 2020, David co-founded Prometheus Research (now an IQVIA business), an innovation leader in registry technologies for patient organizations, medical specialties, and academic research institutions. During his 15+ years at Prometheus, David was privileged to hold senior roles on exceptional teams investigating domains spanning neurodevelopmental disorders to blood cancers.

David is a graduate with honors from Fairfield University.  He resides in Fairfield, Connecticut, with his wife, children, and dogs.

Christine Von Raesfeld

Few people with a cause walk the talk as boldly and graciously as Christine Von Raesfeld, founder and CEO of People with Empathy (PwE), is a pillar of patient advocacy and allyship in the rare and chronic disease community. Through the lens of her lived experiences in health care, she has become a champion for patient voices, diversity and inclusion in clinical research, and equitable patient–sponsor partnerships.

Christine has brought her unique perspective and honed expertise as a featured speaker for numerous conferences on topics ranging from clinical trial recruitment to data and digital rights, from a true patient perspective. She serves as an e-patient scholar with Stanford Medicine X and a Technical Expert Panelist with the Centers for Medicare & Medicaid Services (CMS), among other roles. Wherever possible, Christine generates momentum toward progress around her patient advocacy interests, and she has become a thought leader worldwide, stimulating dialog on a range of topics relevant to patients, clinicians, and industry as moderator and host of People with Empathy: The Inside Track on Clubhouse.