A local landmark will be awash in orange later this month to raise awareness of a rare disease.
June 20, Sandy Springs’ iconic, 34-story King and Queen buildings at the Concourse complex will be illuminated orange in honor of the fourth annual World FSHD Day.
FSHD stands for facioscapulohumeral muscular dystrophy, and the lighting was organized by the Atlanta chapter of the FSH Society, the world’s largest research-focused patient organization for the genetic muscle disorder.
Atlanta chapter supporters will gather at Uncle Julio’s Mexican restaurant from 7 to 8:30 p.m. that evening to enjoy an unobstructed view of the lighting, which starts at 7:30 p.m. The chapter was organized by Dunwoody entrepreneur Jack Gerblick in October. Gerblick was diagnosed with FSHD 28 years ago and started the chapter because he wanted to be a part of the journey to find a cure for this disease.
“The buildings are a prime focal point for the north Atlanta Perimeter, Sandy Springs and Dunwoody areas,” Christiane Wyckoff, whose daughter, Carden, has FSHD, said in a news release. “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 Society and other FSHD advocacy groups around the world will ask individuals with the disorder, 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 one clinical trial is currently under way, and a second 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 said in a news release. “For many of us, it progresses to legs and feet, like mine has, and begins to weaken and kill those muscles.”
About 25% of people with FSHD end up in wheelchairs.
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 two 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.fshsociety.org/?s=atlanta.