Zak Weinstein

Diagnosed at age 7 with a neurological disorder called focal dystonia, Zak Weinstein is now 13 years old and a successful 8th grade student. Because of his dystonia, Zak has difficulty controlling his arms and must take significant medication three times each day and undergo painful quarterly injections to help him manage this genetically inherited condition.

Determined not to let this be a disability, in 2012, together with his mother, Zak co-authored the book, Never Look Down. The book aims to help kids and families dealing with dystonia by providing them with important resources and kid-friendly explanations of the often debilitating and unknown disease. Underwritten by the Dystonia Medical Research Foundation (DMRF), Zak’s book is being distributed to qualifying families at no cost. He also volunteers as a DMRF spokesperson and friend to other kids dealing with dystonia in need of inspiration and support.

Working around and conquering his disability, Zak is a competitive tennis player, he plays trombone in his school’s wind ensemble, and he is an avid video gamer. Zak lives outside of Boston with his 9 year old brother Ben, and his best friend, Georgie, an eccentric rescue mutt