Help us grow our network

The future is in YOUR hands

The FSHD community has an urgent challenge and a powerful opportunity to help support research studies and upcoming clinical trials. Currently, there are nearly a dozen very promising drug candidates. One is already being tested in patients. Others are in earlier stages. We are more hopeful than ever before that a cure is in our sight.

Past experience has shown that for each person who meets the criteria for inclusion in a study, 10 people with FSHD must be screened. The larger the number of potential participants with FSHD who are in our network, the faster and better these trials can find the volunteers they need.

In the US alone, we estimate there are 20,000 to 50,000 people with FSHD, yet we have only 4,000 such individuals in our database. How do we identify more potential participants for these critically important studies? While participation is entirely voluntary, if we don’t know whom to contact, we can’t share vitally important information with patients and families.

How do we identify these individuals to grow our network? This is where you can be invaluable.

First, we know many families have a “point person” who receives our emails. The others count on the point person to pass along useful information. This is not a fail-safe method. Also, our clinical trial alerts are sent only to people in the geographic location of the trial.

What can you do to help?

First, please talk to family members and friends who have FSHD, and encourage those who are not yet in our network to join us.

Second, talk to the medical professionals who provide care to you or your family members about the FSHD Society. We hope these professionals – doctors, physical therapists, occupational therapists, orthotic makers, etc. – know of other individuals with FSHD, and can inform them about the Society and urge them to join our network. We have created a one-page flyer which you can download, print out, and give to your providers.

The more people we connect with, educate, and activate, the more powerful our community will be. Together we will move forward with urgent speed toward a cure.

Editor’s note: We thank Madeline Weinstein for her invaluable advice and input.