Full disclosure: It was never in our mission to expand outside of the United States. However, in our travels over the course of two years, we began to see a need for expansion.
During educational viewings of our first documentary - "The Huntington's Disease Project: Removing the Mask," we listened to patients and caregivers. There were gaps in education and services; in many cases, our peers wanted to join our mission.
As we moved forward in early 2017, offering a robust multimedia program suite and a second documentary, we decided to create WeHaveAFace Global HUBS (Huntington's Universal Base Supports).
The structure was quite simple - to created nonprofit organizations in other countries to provide an additional support network for our population. Each of these HUBS mirror the mission and ethics policy of WeHaveAFace USA. Driven by the desire to broaden awareness of Huntington's and Juvenile Huntington's disease, we were blessed to have amazing and professional individuals lead each of the HUBS.
- Cindy Moore (President), and Cathy Gardiner (Vice President).
- Daniel Heath (President), and Carol Kennedy (Vice President).
- Led by Dr. Herwig Lange
- James Valvano (President), and Ian Torrington (Vice President).
Back in 2011, our goal was to create the first of its kind documentary - "The Huntington's Disease Project: Removing the Mask"
On Facebook, I announced that we were seeking video testimonies from the international community. At that time in our history, it was extremely difficult for us to get this project off the ground. Then, to my surprise, the submissions began coming in. I was elated to see that our Mexican Huntington's disease patients were the first to participate. To this very day, I remember that moment in time. I felt such gratitude from our Mexican brothers and sisters.
Keep that portion of history fresh in your mind.
In 2013, I became Facebook friends with an amazing advocate - Daniel Medina, (Board Member of HD-CARE, in California). We became very close, and each of us attended events relating to Huntington's over the course of two years. In 2016, WeHaveAFace was blessed to have Daniel speak at our first annual convention here in Saint Cloud, Florida. Daniel represented HD-CARE, and addressed the convention with the mission of the organization, and their efforts to find viable treatments for Huntington's disease. Our friendship continued to blossom.
In 2017, Daniel continued his advocacy role and joined us at our second annual convention in Orlando, Florida. By this time, Daniel had agreed to become a Program Advisor for WeHaveAFace. Our second convention was themed - Unity. We were pleased to have many nonprofit organizations join us in the fight to find a treatment or the cure for this disease.
Now let's go back to the portion of history I asked you to keep fresh in your mind. Daniel Medina knew that I had a passion to help our Mexican brothers and sisters suffering from Huntington's disease. At the 2017 annual convention there was one flag missing - Mexico. Daniel and I continued to discuss how we can create a HUB in Mexico. How we can help? Who can we turn to?
The answer was - Brenda Vega. Brenda Alicia Vega Fonseca lives in Mexico. She is forty-two years old, and married with two children. She currently works as the Director of Public Relations in the National Chamber of Women, and also has a television program called Vida en Consciencia. Brenda knows Huntington's disease very well as her mother suffered from the disease.
Daniel and I knew Brenda, and began discussing the possibilities. After many emails, Facebook messages, and phone calls, Brenda Vega agreed to join the team. In late November 2017, WeHaveAFace Mexico joined the HUBS. On November 28, 2017, Daniel Medina and Brenda Vega joined me on WeHaveAVoice Radio to talk about WeHaveAFace Mexico.
From a personal standpoint, it was a very difficult task for me to make this dream come true. Why? The answer is simple - I am not bilingual. During the radio show, I underscored that I would never allow the inability to speak another language stop me from advocating and helping our patients and caregivers. I am blessed and so grateful to have Daniel Medina in my life. Without his constant help, and equal desire to create WeHaveAFace Mexico, I would be at standstill. Furthermore, without the spectacular advocacy efforts of Brenda Vega, WeHaveAFace Mexico would never have come to fruition.
I truly thank Daniel Medina and Brenda Vega for their ongoing dedication. Our aim for 2018 is to have legal nonprofit status for WeHaveAFace Mexico.
What is next?