This Saturday, June 20, 2020, the FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), will be joined by dozens of advocacy groups and allies around the world in celebrating the fifth annual World FSHD Day, a global 24-hour campaign to raise awareness for the disease.
On World FSHD Day, the Society will ask individuals with FSHD, their families, and supporters to take part in its annual Orange Slice Selfie campaign by posting a photo of themselves on social media using an orange slice in place of their smile with the official 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.
Other activities to watch for include:
- At sundown, Boston’s landmark Zakim bridge will light up orange, the official World FSHD Day color.
- Atlanta’s 34-story King and Queen towers will be illuminated in orange.
- In Arizona, the iconic Gilbert water tower will be bathed in orange lights.
- Dyne Therapeutics will host a “fireside chat” with its CEO and individuals living with FSHD to raise awareness of the disease and promote participation in the FSHD Society’s upcoming Voice of the Patient Forum, an externally led patient-focused drug development meeting to give testimony to the U.S. Food and Drug Administration. Dyne has also collected short videos and email messages from FSHD community members about their hopes for a future therapy, and orange slice selfies from the Dyne team, and will share these inspirational messages and images via social media and other channels to continue to drive FSHD visibility in the broader community.
“Since launching the FSHD Therapeutic Accelerator in 2018, we have been laser-focused on eliminating obstacles standing in the way of FSHD drug development research, while opening the regulatory pathway for safe and effective therapies to reach our families,” said Mark Stone, chief executive officer of the FSHD Society. “Our community has responded through financial support and active engagement at our special events, chapter meetings, webinars, and on social media. This is the fuel in our engine, allowing us to go further, faster. We must continue to keep our eyes firmly fixed on our priorities – those vital things that must be done to reach our goal of therapies for families by 2025.”
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.
To learn more about World FSHD Day and to see where an event is occurring near you, visit https://www.fshdsociety.org/. To learn how you can join in to spread awareness, check out the Society’s World FSHD Day toolkit, with more information on how to participate in various ways and spread the world on social media by using the hashtag #WorldFSHD.