Blue Bell, PA
Bill and Jann Maclean
My wife and I have been FSHD Society members for more than a decade. From the beginning it enabled interactions with people who share this rare disease. It also provided tips and techniques to more effectively manage it. Over the years the Society has expanded its mission well beyond communication with others. It has stimulated a growing number of scientists, physicians and organizations to focus on delivering a cure for FSHD.
The Society draws its members into the search for a cure through education and participation in clinical trials. The formation of Chapters across the country has been an important achievement over the past few years. Chapters allow people to meet others with the disease, often for the first time. We have benefitted from all of these activities delivered by the FSHD Society. They allow us to see light at the end of the tunnel.
The FSHD web site is filled with information and breaking news on the disease. This provides us with insight into the investments made by the Society and how they contribute to progress. The Society's scientific board evaluates many different investments before selecting those that can yield the best results. Since many members of the board have FSHD, we trust their decisions.
Without the Society's influence on the scientific and medical fields, any treatment for FSHD would probably not be on the horizon. We now have confidence that a cure will be available by 2025.