The 34-story King and Queen towers at the Concourse in Sandy Springs will be illuminated orange on Tuesday, June 20, in honor of the eighth annual World FSHD Day.
The lighting was organized by the Atlanta Chapter of The FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy.
The Society’s Atlanta Chapter was organized by Dunwoody entrepreneur Jack Gerblick in 2018. Gerblick was diagnosed with FSHD 32 years ago and started the Atlanta chapter because he wanted to be a part of the journey to find a cure for this rare disease.
“The buildings are a prime focal point for the North Atlanta perimeter, Sandy Springs, and Dunwoody areas,” said Christiane Wyckoff, whose daughter, Carden, has FSHD. “We’re so grateful to the people at King and Queen building management for recognizing the need and helping promote awareness in a positive way for FSHD.”
On World FSHD Day, the FSHD Society and other FSHD advocacy groups around the world will ask individuals with FSHD, their families, and supporters to raise awareness of the debilitating, genetic muscle-weakening condition, which affects nearly one million people around the world. There is no treatment to slow or cure FSHD, but two clinical trials are currently under way, and a third is slated to begin later this year.
In addition to lighting up public landmarks on World FSHD Day, supporters are asked to post photos of themselves on social media using an orange slice in place of their smile with the hashtag #WorldFSHDDay. The campaign is designed to stand out on social media by combining the event’s official color, bright orange, with an eye-catching image representing a symptom experienced by many patients—loss of the ability to smile.
“It’s a slow disease that gradually robs people of muscle in their face, shoulders and upper body. It takes things away like being able to get dishes down from the top shelf, wash your hair, the ability to smile and other activities most people take for granted,” Gerblick explained. “For many of us, it progresses to legs and feet, like mine has, and begins to weaken and kill those muscles,” he added. About 30% of people with FSHD end up in wheelchairs by age 50. Over 70% experience debilitating pain and fatigue.
Gerblick said FSHD can be hereditary and the severity of this disease and the rate of progression is unique to each FSHD patient. “The rate of progression for me over the past five years has been downright frightening. One of my daughters has tested positive for this disease. Her children now have a 50/50 chance of also having the disease,” he said.
For more information, visit www.fshdsociety.org.