Jenks, OK
In 1996 I attended the patient meeting in Boston along with my wife, Barbara. At the meeting, the President/CEO Dan Perez asked for help. I called Dan and expressed my interest in joining the Board of Directors (BOD). Later in the year, I was elected to the BOD.
Some background on my connection to FSHD: Around the age of 10, my son Jimmy was diagnosed with FSHD during a physical exam. The school nurse suggested to Barbara that Jimmy have a physical, as her husband was an expert on FSHMD and she recognized some concerns. At their visit with the Pediatrician, the doctor asked Barbara to whistle and raise her arms. So, at the age of 33 Barbara was told she also had FSHD. They came home with the news and were very concerned. I viewed serving on the BOD as a way to learn about FSHD and to contribute to the effort to find a cure.
My son found his abilities decline and we had him visit with a psychologist for about a year around his 12th birthday. He would not speak about his visits or his feelings. By high school he needed a leg brace and could no longer play sports. In college, he met a girl and they became engaged. The engagement was later broken, and in 1994 at the age of 23, the broken engagement and the FSHD caused him to take his life. After 47 years of marriage, Barbara passed away due to COPD and FSHD. (My daughter, Julie does not have FSHD.) The disease hurt my family and I do not want other families to suffer, hence my 14 years on the BOD.
The Society (after more than 28 years of supporting research led by Founder Dan Perez and now by CEO/President Mark Stone) expects to have a treatment by 2025. I am now Board Chairman and am very excited to work toward achieving our goal. A dedicated staff, an exceptional BOD, and our outstanding Scientific Advisory Board are committed to solving the puzzle of DUX4.
Serving on the FSHD BOD is a labor of love for me. Reaching a game changer for our families motivates all of us at the FSHD Society. Both Barbara and I became early members of the Legacy Society by including the FSHD Society in our wills. (We chose to make our bequests from our IRA's.) Please join me in including the FSHD society in your Estate Plan. Your support will continue our patient service and advocacy, as well as continued research support as necessary. Help us help you and your family and friends.