FSHD Advocate is out!

The latest issue of our flagship magazine, FSHD Advocate, has left the printers and will be landing soon in your mailbox. To get an advance look, or if you’re a digital-only reader, here is the full issue online. Highlights include: Special section on the Therapeutics Accelerator project, what it is and what we are doing … Read more of “FSHD Advocate is out!” »

Tips and tricks: Nite Hood

Eye dryness during the night is a chronic complaint for those who can’t close their eyelids fully, as is often the case for people with FSH muscular dystrophy. One solution from the grocery store aisle is to use Glad Press & Seal as a self-adhesive mask that holds eye ointment and moisture in place. For … Read more of “Tips and tricks: Nite Hood” »

Marie Morrell joins FSH Society Board of Directors

At its December meeting, the FSH Society’s Board of Directors elected Marie Morrell, JD, as its newest board member. Marie has worked in the aerospace and defense industry since 2003 and currently serves as a Vice President and in-house counsel for an Arizona-based company that designs, develops and manufactures survivable fuel systems for helicopters around … Read more of “Marie Morrell joins FSH Society Board of Directors” »

Miami FSHD Family Day Talks

Here are the agenda, speaker biographies, and presentation materials from our Miami FSHD Family Day Conference, which was held on Saturday, February 23, 2019, at the beautiful Newman Alumni Center at the University of Miami in Coral Gables. Click on the talk titles to download the slides. Best practices in caring for FSHD • FSHD … Read more of “Miami FSHD Family Day Talks” »

The 11-step challenge

At the close of 2018, two adventurers accomplished what heretofore was thought impossible – they each traversed Antarctica solo, unaided, on foot.  One of these intrepid souls, Louis Rudd, when asked what he did to keep going, retold a story about Robert Falcon Scott’s 1912 failed attempt. Someone had calculated that had Scott taken “just … Read more of “The 11-step challenge” »

Industry collaborative workshop on FSHD clinical trial readiness

Yesterday, the FSH Society convened a landmark meeting at the Tommy Douglas Conference Center, a stone’s throw from the headquarters of the Food and Drug Administration (FDA). Several FDA regulators attended in addition to researchers from seven biopharmaceutical companies, academic scientists who are leading the effort to prepare the field for clinical trials, and representatives … Read more of “Industry collaborative workshop on FSHD clinical trial readiness” »