We are proud to announce our newest chapter of the FSH Society, in St. Louis, MO. Big thank you to Marsha Sverdrup for stepping up as our chapter director. We will be officially launching the chapter on November 1st at the Daniel Boone Branch Library. We really hope you’ll be there – more details &… Read More »
Check out this audio from an interview with Sue Aumiller, director of our Columbus Ohio chapter, with Mark Blazor from Columbus’s top local station, 610-WTVN. Mark read the Columbus Dispatch’s story about Sue and her family and felt compelled to call. When you open one door, others open too. Way to go Sue!
STUDY #1 Your participation is essential to advancing research on FSHD. Participants are sought for a University of Minnesota study on muscle stem cells in FSHD. The principal investigators are Michael Kyba, PhD, and Peter Karachunski, MD. What is involved? Study participants (FSHD and control individuals) will choose to provide any one or all of the following… Read More »
We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get… Read More »
You can now register for the FSHD Family Day Conference in Kansas City, taking place on November 10. Registration is free but required so that we have accurate numbers of attendees for planning purposes.If you have already RSVP’d with Kiley Sims at KUMC, you don’t need to register again. Otherwise, please register here. Deadline to register… Read More »