Synopsis:
WeHaveAFace.org is an international advocacy organization for Huntington’s and Juvenile Huntington’s disease. It was time for us to show the world the deadliest disease known to humanity - Juvenile Huntington's disease (JHD). Through a labor of love and minimum funding, we produced "The Purple Road.”
This documentary takes audiences on an international journey into the lives of children and families who are ravaged by Juvenile Huntington's disease. This hereditary, genetic, and fatal brain disease, devastates the patient and family unit with only one outcome - death.
Imagine being diagnosed with Parkinson's disease, Alzheimer's, Schizophrenia, MS, Bi-polar disorder, Dementia, and depression, all at the same time. This terminal illness is Juvenile Huntington's disease. The Purple Road is a collection of stories of families fighting for the lives of their children...fighting to keep their sanity...fighting to find a viable treatment or the cure. The Purple Road is a journey across the USA, Canada, England and Wales, and Germany. Every disease-oriented group has a specific color or symbol to broaden awareness of their mission. The color purple is our symbol, and The Purple Road is our mission to broaden global awareness of Juvenile Huntington's disease. Too many of our children have earned their JHD Warrior Wings, and it is our promise to thousands of families across the world, to tell these stories.
Director Biography - James Valvano
James Valvano (forty-six years old), has over twenty years of experience working with individuals with disabilities. James was diagnosed with Huntington's disease in 2009 and provided care for his brother John and his father, Joseph. Sadly, James lost his brother and father from Huntington's disease, and there are dozens at risk in his family.
*James Valvano created WeHaveAFace.org - a 501(c)(3) nonprofit charity for Huntington's disease. James is an award-winning filmmaker: "The Huntington's Disease Project: Removing the Mask" - 2015
HDSA - June 2016 Marjorie Guthrie Award Recipient
HSG - Huntington Study Group Associate Member
EHDN - European Huntington's Disease Network Member
Residential Counselor for Catholic Charities (NY)
Program Manager / Program Training (FL) for the OARC
Group Home Management (FL) for Spectrum Community Services
AMAP Certified
Applied Behavior Analysis Certificate via Rollins College (FL)