Christine Waggoner

Christine Waggoner and her husband Douglas Dooley founded the Cure GM1 Foundation in April 2015 in honor of their daughter Iris and all those affected by GM1 Gangliosidosis. Christine graduated from Brown University where she studied Visual Art and Computer Science. The combination of studies in art and technology served as a basis for her

Cristina Skrypnyk, MD, PhD

M.D., PhD in Medical Genetics, European Board of Medical Genetics and Genomics certification; more than 40 postgraduate international training in cytogenetics, molecular cytogenetics, genetic and genomics counselling, member of reputed international genetics societies ; involved in medical genetics research,; dedicated volunteer of international genetic disorders patient’s organizations; strongly supports an ethical medical practice ;  passionate advocator of

Ann Chivers

ASUK is a patient led, resourceful and dynamic charity providing information, support and advice for children and adults with Alström Syndrome, their families and loved ones and the professionals who work with them. We are a small and dynamic charity, hugely ambitious to make a difference to the lives of people with this ultra-rare condition.

Patricia Weltin

Patty Weltin is the CEO and Founder of the Beyond the Diagnosis.  She is the mother of two children with Ehlers-Danlos Syndrome, a rare disease.  Patty began working in this space by creating a new business model of working by state. She is from Rhode Island.  Her award winning work in state-level advocacy grew to national advocacy efforts.

Catherine Stratton, MPH

My name is Catherine Stratton, and I am a Member of the Board of Directors of the Moyamoya Foundation. My motivation for joining the Moyamoya Foundation is to help serve this community and particularly represent Moyamoya patients through my membership. Outside the Foundation, I am currently working as a cardiology clinical researcher in the area