My promise to our Huntington's community in Mexico began in 2009. At that point in time, my mission was in its infancy. I decided to produce the first-of-its-kind documentary which would finally "remove the mask" of Huntington's disease. Throughout 2009, I scoured Facebook in search of other Huntington's organizations who would be interested in participating. Months went by, and I received an email from AMEH (Asociación Mexicana de la Enfermedad de Huntington).
AMEH had sent me dozens of emails containing video testimonies of Mexican patients who wished to participate in this documentary.
Our Mexican friends wanted to remove the mask of this horrific disease. I recall the emotions I experienced as I watched each of the video testimonies. Their dedication and willingness to participate in a film which would finally tell the truth about this disease added gravity to my mission. People I had never met, nor could understand, came out from the shadows. It was a feeling I had never experienced in my lifetime. In 2010 and 2011, I extensively researched Huntington's disease in Mexico and realized there were very limited resources available for patients and families affected by this disease. Although these patients and families struggled (and continue to struggle) beyond anything imaginable, they came together and decided to make a difference.
At that time, many within the community (including Huntington's doctors and organizations) wanted nothing to do with this film (or me), and the level of negativity for this project was overbearing. Was this reaction normal or expected? In hindsight, I realize that the film was bold and touched on topics once considered taboo. However, our Mexican friends (at AMEH) wanted the world to hear their voices and see their faces. That was the moment when I realized that nothing, or no one, would stop us from showing the world the faces of Huntington's disease. Because of the participation of our friends at AMEH, I received a flood of video testimony submissions from around the world. The dominos began to fall, and a comprehensive documentary about Huntington's disease was in sight. In 2015, "The Huntington's Disease Project: Removing the Mask" was completed, and a global perspective of Huntington's disease was finally delivered.
So, what promise did I make in 2009? Although it took almost a decade, WeHaveAFace is now finally in a position to help our Mexican friends - way beyond a documentary. With the incredible dedication and leadership of Brenda Vega, WeHaveAFace Mexico is about to bring change and quality care to our patients and families in Mexico.
Watch this space for Part Two.