Raise Awareness

Max Adler at the Celebrity Walk 'n' Roll

Max Adler at the Celebrity Walk ‘n’ Roll

Here are some of the ways in which we are raising awareness:

The FSH Society is on a mission to raise the visibility and awareness of FSHD to a much higher level and to further reduce the time to accurate diagnosis.

It is known that FSHD has been around for five centuries in some families and was first described medically in 1885, but natural history and progression studies are now just beginning. In the not too distant past, average time to diagnosis was 11 years for a patient with FSHD. This is rapidly changing. Although many doctors, even many neurologists, remain unfamiliar with FSHD, awareness is higher than it has ever been. Time to diagnosis has decreased. There is now a genetic test for FSHD.

The FSH Society and patients are visible at professional meetings for neurologists, geneticists, counselors, therapists and other professionals to provide continuous exposure and visibility for FSHD. We work to cultivate and build relationships with funding agencies, decision-makers, and community leaders by encouraging their active engagement in FSHD care and research.

In 2013, we established an Honorary Board of public figures from entertainment and sports to help raise the visibility of FSHD. We also launched a series of public service announcements for national television broadcast and are developing social media campaigns to engage a wider public. Our volunteer-led fundraising events also help raise awareness.

Through patient involvement and activism, and with patients visible as stakeholders in the clinical management of FSHD, the Society is bringing FSHD out into the light.