Today, The FSH Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), announced the launch of its national chapter development program to provide the opportunity to fund more research, connect with more patients, and speed up progress toward treatments and a cure for FSHD.
FSHD is among the most prevalent of the nine primary types of muscular dystrophy affecting adults and children. The genetic disorder is estimated to affect 870,000 individuals worldwide and causes progressive weakness, typically in the face, shoulder blade, arms, legs, and torso, but may affect almost any skeletal muscle in the body. There is currently no treatment or cure and approximately one-quarter of patients become dependent on wheelchairs.
Led by volunteers and supported by FSH Society staff, the new chapters will bring together community members in locations across the U.S. to inspire one another with their unique strengths and skills. Individual chapters are tasked with the goal of empowering patients and families, educating and building connectivity within their communities, as well as fundraising toward finding a cure for FSHD. Each chapter will host at least two meetings per year, including an educational or empowerment component, and will also organize at least one fundraiser per year.
The first 13 chapter programs are being launched in 2018 in the following locations with chapter leaders determined:
- Atlanta—Jack Gerblick
- Arizona—Marie and Landon Morrell
- Colorado—Amanda Hill
- Connecticut—Kathy Senecal
- California, Los Angeles –Laurie Heyman
- California, Sacramento—Karen Dunkerly
- California, San Francisco Bay Areay—Kent and Sue Drescher
- Illinois (Chicagoland)—Dave Lukas
- Massachusetts (New England)—Kristin Zwickau
- North Carolina—Meredith Huml
- Ohio (Columbus)—Sue Aumiller
- Pennsylvania (Philadelphia)—Bill Maclean
- Washington DC (Mid-Atlantic)—Manuel Gomez
To find a nearby chapter and get involved, visit the FSH Society Chapter page on the FSH Society website.
In conjunction with the chapter launches this fall, the FSH Society will be hosting its new, signature Walk & Roll to Cure FSHD fundraisers. These events unite families, friends, neighbors, researchers, and local businesses and will take place all over the nation. “We call it a Walk & Roll to let people know it is inclusive of everyone, from walkers and runners to those who ride scooters and wheelchairs,” said Beth Johnston, Chief Community Development Officer of the FSH Society.
The first Walk & Roll will be held in Castle Rock, Colorado on September 8, followed by events in Columbus, Ohio, the San Francisco Bay Area, Pacific Northwest, and North Carolina throughout the months of September and October. For a full list of upcoming Walk & Rolls along with chapter meetings, visit the Events page on the FSH Society website.
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