WeHaveAFace.org Global HUBS
WeHaveAFace Global HUBS Mission:
WeHaveAFace Global HUBS aims to broaden global awareness of Huntington’s disease and Juvenile Huntington’s disease. We must do everything we can to help find treatments or a cure for this disease. It is important that we help our incredible researchers in every possible way. By embracing and utilizing various state-of-the-art technologies: international videos, films, radio, mobile application, electronic publications, and mainstream social networks, we will continue to reach our peers in the Huntington’s community, as well as educating the general public. WeHaveAFace is the premier multimedia advocacy organization for Huntington’s disease.
My name is James Valvano, and I live in Saint Cloud, Florida. In 2009, my family were introduced to two words – Huntington’s disease. 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. Eventually, the person with HD becomes incapacitated, and completely dependent upon others for his or her care. Children with a parent who has the HD gene are given a 50/50 chance of inheriting the disease.
My brother John was diagnosed with HD (early 2009). Soon after his diagnosis, our family was touched again – I was diagnosed with HD (mid 2009). Emotionally and mentally, I became a “monster.” I became unrecognizable to those who loved me. Then the day arrived. I stood looking at myself in the mirror and did not like who I had become — what I had become. I decided that I had to make a change — shed my skin. A positive wave came upon me. I found a new sense of “me” emerge, and a need to reach out and help others. In the beginning, it was a challenge. I did not know where to start, so I chose Facebook. I noticed that I was not alone. In a matter of weeks, I witnessed the birth of HD support groups. In early 2011 my father was tested and was diagnosed with HD.
In late 2012, my father passed away from complications of cancer and Huntington’s disease. After five years of caring for my brother at our home, on July 17, 2016, my brother John passed away from Huntington’s disease. As of 2016, three of us remain positive for Huntington’s (there are seven siblings). Two of my nieces have tested positive for HD, as well as three of my cousins. As with many large families, we have dozens at risk for the Juvenile and adult form of the disease.
How WeHaveAFace.org began:
In 2009, I entered a film competition – The Neuro Film Festival (held by the AAN – American Academy of Neurology). I was able to express what HD has done to my family and to the lives of others around the world. I pressed forward to tell “the HD story” through my eyes — the eyes of a person with Huntington’s disease. Prior to the production of this film, I gathered my entire family and expressed my ideas for a five-minute film entitled — “The Faceless Faces of Huntington’s Disease.” With the support of my family, we took on this endeavor together — on a $20.00 budget. In a very short time, the film was completed, and was submitted. Although the film did not win, it was the first of its kind to send a clear and concise message – we must remove the mask of Huntington’s disease and show the world the truth about this disease. Huntington’s’ is more than a movement disorder, and we must shed light on all aspects of the disease which have been hidden for far too long.
The movement grew rapidly and I believed that the mission should continue. To move this project forward, I created the website WeHaveAFace.org, to gather support from the Huntington’s disease community — worldwide. Quickly, several individuals decided to help create the documentary and joined WeHaveAFace.org. Each person on the Team shared my vision and passion, and we were able to show the world what a small group of individuals could do. By utilizing social networks, we moved forward and so did the mission. What we planned for the film was straightforward. Community members worldwide wanted the truth to be told — all aspects of this disease to be shown. I was stunned by the overwhelming response and support from the community at large.
Our growth continued, and our reach went global. We realized then, that it was time for a new approach and fresh ideas to emerge pertaining to advocacy for Huntington’s disease.
In 2015, the international documentary, “The Huntington’s Disease Project: Removing the Mask,” was completed and entered into film festivals across the globe. Currently, the film has been seen by more than 20 countries and we were blessed to have received many selections, and several wins – Best Feature Documentary. We were blessed to receive some beautiful reviews. Our mission was far from over, and we broadened our reach, community events, and advocacy focus.
On June 4, 2016, at the 31st HDSA Annual Convention in Baltimore, I was honored to receive the HDSA Marjorie Guthrie Award. I was overwhelmed and touched by this award.
WeHaveAFace Global HUBS grew exponentially in the summer of 2016 as we released the news that we were expanding our reach within the USA, Canada, United Kingdom, and Germany. Additional Global HUBS will be announced in 2017. Currently these Global HUBS are in place to provide additional support and resources for our peers with Huntington’s, and their loved ones. Via our radio show “WeHaveAVoice” and through our international mobile App, we continue to strive to educate individuals – globally. Please visit www.WeHaveAFace.org for additional programs we offer our global population.
WeHaveAFace Global HUBS will continue to expand its reach in 2017 to fill gaps in advocacy, support, and education. Read our current newsletter.
Each of us at WeHaveAFace Global HUBS lives by the quote from Margaret Mead –
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”