PRESENTERS

Co-founder/President, Friedreich’s Ataxia Research Alliance; Former Director & Chair, National Organization for Rare Disorders; past President of BOD,…

Ms. Naomi Booker is a Health Program Specialist, within the Division of Clinical Research, Office of Global Health and Health…

Philip J. (P.J.) Brooks is the acting director of NCATS’ Division of Rare Diseases Research Innovation. Brooks represents NCATS…

Dr. Vicky Cattani is the Associate Director of Research Programs at the Parkinson’s Foundation, where she manages a…

Penny Dacks, Ph.D. is Senior Director of Scientific Initiatives at AFTD where she leads strategy for research initiatives…

Aliza Fink, D.Sc. is the Director of Research Programs at the National Organization for Rare Disorders (NORD®). In…

Dr. Reghan Foley graduated from Georgetown University School of Medicine and completed her Child Neurology and Neurology training…

Paul Gross is a driving force in accelerating clinical and translational research in neuroscience for cerebral palsy and…

Maria Kefalas became a patient advocate and philanthropist for gene therapy after the diagnosis of her youngest child,…

Melissa Kennedy serves as CEO of International Rett Syndrome Foundation, an advocacy organization with a mission to accelerate…

Dr. Travis Lewis is the Executive Medical Director at Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly…

Timothy Miller, M.D., Ph.D. is Vice Chair of Research for the department of Neurology and the David Clayson…

STEPHANIE J. MONROE is Vice President and Senior Advisor of Health Equity and Access at UsAgainstAlzheimer’s, a national advocacy…

Dr. Jill A. Morris is a NINDS Program Director.  She is responsible for a disease research portfolio including…

Debra Niehoff, PhD, is the Director of Research & Grants for AFTD, where she oversees AFTD’s research portfolio…

Tony leads clinical trial diversity operations across all Lilly therapeutic areas.  He joined Lilly in 2019, managing teams…

CureSPG50, a Canadian charity, was founded by Terry Pirovolakis and his wife Georgia after there child received a…

Vasiliki (Vaso) Rahimzadeh is an Assistant Professor in the Center for Medical Ethics and Health Policy. In her…

Manish Raisinghani, MBBS, PhD is CEO of Target ALS Foundation. Manish has led the foundation since its founding…

Gopa Raychaudhuri is the Associate Director for Special Programs in the Office of the Director, Center for Biologics…

As a Program Director in the Office of Global Health and Health Disparities, Dr. Sankar has a diverse…

Dr. Courtney Silverthorn is an Associate Vice President for Science Partnerships at the Foundation for the National Institutes…

Diane Stephenson is a neuroscientist by training with 30 years combined experience in academic neuroscience and drug discovery.…

Neil Thakur brings more than two decades of experience as a public health expert to the fight against…

Dr. Pierre R. Theodore serves as the Executive Director of Health Equity and Patient Impact at the Global…

Louise Vetter is the President & CEO of the Huntington’s Disease Society of America (HDSA), the largest public…

As Senior Principal and Global Strategy Lead for Nonprofits in IQVIA’s Integrated Heath Practice, David informs IQVIA’s direct-to-patient…

Few people with a cause walk the talk as boldly and graciously as Christine Von Raesfeld, founder and…