Atlanta, GA
I became involved with the FSHD Society because I wanted to be an active participant in the fight to find a cure, not just a spectator. I'm energized by being a strong advocate of the FSHD Society's mission of strengthening communities, raising awareness of the disease and finding treatments and a cure by 2025.
What moved me to action was the opportunity to bring hope to patients and their families. Hope that treatments and a cure will be coming soon. Hope for future generations, including my children and grandchildren. Hope that they will no longer suffer from the effects of this horrible disease. Confident that by giving of my time, talent and treasure, I will be instrumental in helping to discover those treatments and a cure. That I contributed to touching the hearts of patients and their families. When I leave this earth, I want that to be my legacy.
I also participated in our Voice of the Patient Forum with the FDA back in June. The purpose was to help the FDA understand the challenges of living with FSHD as well as its impact on families. Watch the video below for a 2-minute excerpt of my statement where I talk about my 3 grandchildren.