Here are the slides and videos from the Bay Area Family Day conference, held at the Li Ka Shing Center, Stanford Medical School, on Sunday, April 28, 2019. Click on the titles of the talks to see the slides. Click on “video” to watch the recorded talk. Advances in FSHD treatments Getting ready for FSHD… Read More »
Bay Area Family Day Video and Slides
Stance-control brace webinar [VIDEO]
Here is the recording of our June 8th webinar with Abbey Downing, a certified prosthetist/orthotist from the Hanger Clinic in Wethersfield, CT. Ms. Downing has worked with Kathy Senecal, a client with FSHD, on fitting her with a brace. She provides an excellent explanation of the mechanics of this type of brace and the types… Read More »
Webinar video: FSHD 101
In our webinar from May 22, Samantha LoRusso, MD, provides a concise introduction to the basic facts about FSH muscular dystrophy and answers dozens of questions from our live webinar audience, everything from unusual symptoms, types of braces, genetic testing, and new treatments. https://www.youtube.com/watch?v=4fu5hH3Q5SM?t=5s
Medicare coverage for ongoing maintenance physical therapy
Article adapted with permission from Melissa Fox, PT, DPT, University of Virginia Health System. There are times when a short course of physical therapy (PT) can meet your current needs, and you can then continue exercises on your own. Other times, however, ongoing PT may be necessary to maintain your current status (strength, flexibility, mobility,… Read More »
Surgery fixed my eye problems
by Nikki Young, Clarksburg, Maryland Like many others with FSHD, I have suffered from dry eyes. Weakness in the muscles around my eyes prevented me from closing my eyelids fully, even in my sleep, so my eyes would become dry, itch, burn, and tear up. It got so bad at times that people would ask… Read More »