FSHD Connect pre-conference workshop: A Mindful Way through FSHD

Flamingo Las Vegas, Carson City ballrooom Saturday, June 9, 2018 9:30-11:00 AM PST An experiential workshop for patients, family members, and friends for managing stress, illness, and disability. This is being offered as a pre-conference activity of the 2018 FSHD Connect. If you wish to attend, RSVP to Robyn O’Leary (robyn.oleary@fshsociety.org) and put “FSHD Connect … Read more of “FSHD Connect pre-conference workshop: A Mindful Way through FSHD” »

Seeking nominations for 2018 FSH Society Community Award

The FSH Society is soliciting nominations for its 2018 Community Award, for an individual or group that has been an outstanding contributor to the FSHD community. Given every two years, the Community Award in 2016 recognized David Housman, chair of the FSH Society’s scientific advisory board, and Chris Stenmon, former treasurer and fundraising leader for … Read more of “Seeking nominations for 2018 FSH Society Community Award” »

Webinar: Psychological interventions to improve well-being in muscle diseases

Note: The video will be posted only until May 31, 2018. Download Chris Graham’s Slide Deck. In this talk, focusing mostly on his group’s work in muscle disorders, Chris Graham, PhD, DPsychol, describes some of the findings from studies looking at what coping methods seem to be beneficial for well-being. He then describes some psychological … Read more of “Webinar: Psychological interventions to improve well-being in muscle diseases” »

Project 2025

Dear Friends, At the FSH Society, our moonshot is to get to a treatment for FSHD―an intervention that will slow or halt the muscle deterioration. We have set a target year, 2025, a date our scientific advisors agree is realistic to get the first disease-modifying drug to our families. It is an ambitious goal, but … Read more of “Project 2025” »