Huntington’s Disease Awareness Advocates
My names is James Valvano and I chose to advocate for Huntington’s disease in 2009. Four of us have Huntington’s disease (my father, brother, niece and me.)
HD – Huntington’s disease is a hereditary, degenerative, and terminal brain disease. Huntington’s disease slowly diminishes the affected individual’s ability to walk, talk, and reason. In time, the person with HD relies completely upon others for their personal care. HD affects the lives of entire families – emotionally, psychologically, socially, and economically. HD affects males, females, and knows no ethnic and racial boundaries.
Every child of a person with Huntington’s disease has a 50/50 chance of inheriting the fatal gene. Juvenile Huntington’s disease (JHD) affects younger individuals. Individuals who suffer with JHD experience the same challenges as individuals with HD, however the onset of physical and emotional symptoms happens earlier in life. These younger individuals experience many additional traumatic symptoms of Huntington’s disease: epileptic seizures, adverse behaviors, and mental dysfunctions… the list goes on. These JHD Warriors need much more support and resources. Currently, not many of these vital resources are available, which makes the battle so much more difficult!
WeHaveAFace.org is the first organization founded to increase international awareness of Huntington’s disease through a cinematic form. Founded in March 2011, we merged with Deshalamar.org of New York. Clarice Miller and Deon Leftenant (founders of Deshalamar.org) have been the driving effort and support behind the success of our project. Together, we have taken a multifaceted approach toward advocacy. In addition to the documentary, WeHaveAFace.org joined forces with Melissa Biliardi’s “Help 4 HD – The HD View” BlogTalkRadio show. This vital addition to the project injected a “voice” for Huntington’s disease out to our community, and brought us a venue to discuss sensitive topics which were never discussed before.
The Huntington’s Disease Project continued to morph as we offered the international community additional components: Education – Resources – Information. We furthered our support by offering a free mobile application to the international community, and our “On the road…Help 4 HD” materials. We listened, and heard our fellow peers speak. The community has always been the main focus of our drive and determination. Since the creation of WeHaveAFace.org in March 2011, it was through the support, stories, and experiences of the JHD/HD community that our mission became a reality. In less than a year, we were blessed as the international community began to understand our cause, and the urgency to reach out and make a difference. It was affirmed that our mission aligned with so many within our community. As individuals who are directly affected by Juvenile Huntington’s disease and Huntington’s disease, we were able to create a movement never seen before. It was time to “step outside the box” and advocate for Huntington’s disease through all means necessary. We are the community, and time is of the essence. A change was necessary, and the stagnancy which has existed within the Huntington’s disease community for decades, had to be examined.
WeHaveAFace.org is an independent, educational project comprised of a team of individuals within the JHD/HD community. Via the documentary, WeHaveAFace.org will facilitate the first venue by which international community members will be able to tell their stories: uncut – uncensored – untainted. Light must be shed on all aspects of Huntington’s disease and brought to the forefront. It is time to face the challenges within our own community. “The Faces of Huntington’s Disease: I am No Longer a Faceless Face” focuses on the personal stories of the international Huntington’s disease community. The film is the first of its kind, created solely by individuals within the JHD/HD community, and a legacy for future generations. Each of us has a special and unique way to advocate.
My contribution to the Huntington’s disease community is through writing and film. I coined the phrase – “I have Huntington’s disease, but Huntington’s disease doesn’t have me” and that is how I will continue to lead my life. There is hope…there is hope! You are loved!
Source: Movement for Hope