Time flies when you have your nose to the grindstone, working with focus and determination on a lofty goal. It has been an amazing 30 years since Daniel Perez and Steve Jacobsen started the Society. Back then, almost no one was doing research on facioscapulohumeral muscular dystrophy (FSHD). The human genome had not yet been mapped. The internet was in its infancy. People diagnosed with FSHD went through life never meeting another soul with the same condition. Doctors told their patients to avoid exercise or, worse, to expect to not live beyond their 20s. Today, thanks to the work started by our pioneers, supported first by a handful and now by thousands of families, we are a worldwide community of more than 10,000 patients, families, friends and supporters, researchers and clinicians. We have identified the genetic mechanism causing FSHD and nearly a dozen companies are working on treatments.
Check out our 30th anniversary timeline, marking major milestones in our progress. While three decades is far too long a time for patients who need treatments now, this is a timely reminder that we have in fact come a great distance. A dream that once upon a time seemed unimaginable, is now almost within reach, with all of us pushing forward together.
Click on the image to expand.