Board member George Pollock, who is racing across America this June to raise awareness and funds for FSHD, was featured in his high school’s magazine. In the article, George discusses what gave him the idea to participate in the race, what keeps him up at night worrying, and what he hopes to come out of the race. Read it here.
Source: Perspectives Spring 2017.
“In this life-changing storm, it feels good to have someone like you reach out to us so quickly and competently.” – Alex and AC Hoffmann, parents
When my mother, Carol, was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in the late 1950s, she was told she had only five years to live. As appalling as we find this today, knowing that most people with FSHD will live a normal lifespan, back then most physicians knew next to nothing about the condition.
Five years passed, and Carol noticed she was still very much alive. Years later, when the FSH Society was founded, it became part of our mission to make sure no patient ever goes through a similar experience. At the FSH Society, we researched facts about FSHD and provided accurate information, validated by our own experience as patients. For years, Carol was the voice on the phone for all who sought help and comfort. My mother passed away in 2012, but her spirit lives on in the Society’s mission to inform and empower all of us with FSHD. Continue reading
World FSHD Day is right around the corner and we know you want to be ready to raise awareness. The Society’s World FSHD Day t-shirts are here in the official color: orange. Get into the spirit of World FSHD Day however you can! Get creative! Paint your nails orange, put up orange lights near your house, participate in our orange slice selfie campaign, use orange chalk to draw the World FSHD Day logo on your driveway! Dress up your friends in the official t-shirt and do a flash mob at the mall! The possibilities are endless. Share whatever you do to mark the day with us on our Facebook page, Twitter, and Instagram, using #WorldFSHDday. Unite with FSH Society members all over the world as we raise awareness about Facioscapulohumeral Muscular Dystrophy. Buy your t-shirt here!
Written by Trisha Lynn Sprayberry
Las Vegas, Nevada
My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first patient conference, hosted by the FSH Society, and their inaugural #CureFSHD gala. It was at the grand Westin Copley Place Hotel in Boston, Massachusetts.
Written by Paul Shay
Grab Bars. In conjunction with my half-steps, we added a conventional grab bar in the doorway to our garage. My wife came up with the idea of using a six-inch, black wrought iron drawer pull in the doorway in our house that contains the step from the entry area to the main level. It works very well, and it looks much less obtrusive and “institutional” than a standard grab bar.
For our shower, we purchased a couple of 12-inch suction cup-mount grab bars and installed them on the walls. They are intended only for assisting in stepping into and out of the shower, and for help with balance―they can’t bear your full body weight. The best thing about them is their portability, thanks to the suction cup-mounting system. They fit handily into a suitcase and make it possible to use hotel rooms that lack installed mobility aids in conjunction with:
Folding Toilet Frame. Essentially a portable set of armchair-like padded rails, this has proven to be one of our best purchases. It is fully height adjustable and fits behind the seat of any commode without mounting hardware. We have been able to toss it in the trunk and take off on trips without having to make an ADA-compliant room reservation.
Stairlift. By far our largest purchase to date has been the installation of a stairlift in our home. With our master bedroom and my office on the second floor, access was becoming a serious issue. We were able to buy a gently used unit with a factory warranty directly from Stannah for $4,300 (including the use of an Angie’s List coupon). While that is not an insubstantial amount, it beat having to move! The unit has a battery backup feature in case of a power failure, and remote controls that allow the chair to tote bulky/heavy objects up and down the stairs
Written by Jim Albert
A cancer drug has been shown to potentially rescue some of the damaging effects of DUX4, the gene implicated in FSH muscular dystrophy. The laboratory of Peter Zammit, PhD, Randall Division of Cell and Molecular Biophysics, King’s College London, United Kingdom, in collaboration with Robert Knight, PhD, of the Department of Craniofacial Development and Stem Cell Biology at King’s, has published the results of its research on the activity of an FDA-approved drug, sunitinib, as having potential therapeutic activity for FSH muscular dystrophy (FSHD). Continue reading
The FSH Society has a long history of partnering with biotech and pharmaceutical companies to facilitate recruitment of patients and families for focus groups, provide patient input to clinical outcome measures, and participation in clinical trials. The Society also assists companies by providing connections, insights and scientific information in the research, therapeutic and clinical areas. For the ongoing trial of ACE-083, the FSH Society has worked with the drug’s developer, Acceleron Pharma, to better understand how FSHD affects patients through a survey (see story here) as well as to educate patients about the process of enrolling in the clinical trial. In response to the high degree of interest in the ACE-083 trial, Acceleron has worked with the FSH Society to provide the following update and FAQ. We thank Acceleron for the company’s commitment to patient education. Continue reading
The FSH Society is pleased to announce their Watch Newsletter for Spring 2017. Featured in the Watch are articles about
- Highlights from the FSH Society’s 2016 International Research Conference (page 1)
- Young Hollywood comes out in support of the Los Angeles Ghostly Gala (cover story)
- New FSHD family cell lines being released for research after 30 years in limbo (page 3)
- Cognitive-Behavioral Therapy and exercise’s ability to slow muscle degeneration (page 4)
- Team FSHD Cycling’s Race Across America (page 15)
- How to find Free Money, from our Development Officer, Beth Johnston, in her advice column “Ask Beth” (page 5)
- A cancer drug that might point the way toward a treatment for FSHD (page 6)
- Accessibility hacks, mobility aids, and tips (page 8)
- Two FSHD mouse models (pages 12 and 17)
And much more! To read the full Watch, click here.
Two of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD. Diane is Lexi’s mother and the two live in Massachusetts. Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness: “It’s actually really freeing, knowing that all these people know about my disability. It means I don’t have to hide it anymore. The more awareness I can spread, the more research we can get for the FSH Society.”
Diane says this condition has made the two of them closer through their shared experience: “My daughter has actually inspired me to be more open about our disease and she is definitely braver than I ever was growing up.” Both Diane and Lexi talk about attending the FSH Society’s patient conference last November and the challenges of living with FSHD. For the whole story, read here.
Written by Paul Shay
I am one of the lucky, late-onset FSHers: diagnosed at age 57, now 71. As my progression has been relatively slow over those 14 years, I have incorporated a number of adaptive devices and techniques that I can share with you. Since my wife and I are still working, we have been fortunate enough to have the resources to try out a number of products.
As I am mostly affected in my shoulders, biceps, and quads, my issues revolve primarily around climbing stairs, reaching high and low, and getting up from a seated position.
For those challenges, here are a number of things and tricks I’ve found useful: Continue reading