Celebrate World FSHD Day on June 20th
Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. Why June 20th? Read our blog post about the fascinating history of the day that started with brothers Marco and Sandro Biviano, from a small island off the coast of Sicily. There are many ways to help spread the word about FSHD on this special day!
How to get involved
The Orange Slice Selfies campaign is our signature social media event to recognize World FSHD Day. Supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay (please also use #CureFSHD and be sure to tag us @FSHDSociety!) If you want to help raise awareness and funds beyond June 20th, we encourage you to join our Orange Slice Selfie Challenge on Facebook, which runs from June 14th through June 20th. Learn more about the challenge.
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: the loss of the ability to smile.
A smile is universal. It is a simple gesture that can have a profound impact on our mental and physical well-being, as well as on the relationships we have with others. As a crucial nonverbal form of communication, the inability to smile can have a significant negative impact on a person's life, both socially and emotionally.
Yet for 1 million people around the globe living with facioscapulohumeral muscular dystrophy (FSHD), the inability to smile is often a hallmark of the disease.
But the loss of a smile is just one of the debilitating effects of FSHD, a progressive genetic disease that leads to the weakening of skeletal muscles. Typically beginning in early teenage years with the loss of muscles in the face (facio), shoulders (scapula), upper arms (humerus), legs or core, FSHD can spread to any muscle. Around 20 percent will need a wheelchair by age 50. Over 70 percent experience debilitating pain and fatigue.
That’s why every year we celebrate World FSHD Day with our orange slice selfie campaign. World FSHD Day helps raise awareness about this rare disease and provides an opportunity to support those who are living with it. Participation is simple, so anyone can increase awareness about the disease and its impact.
Increased awareness can help improve understanding and knowledge of FSHD and promote early diagnosis and treatment. It can also encourage support for research to find effective treatments and, ultimately, a cure. We encourage you to help raise awareness by acknowledging the power of a smile and the impact of FSHD by sharing your orange slice selfies!
Raise awareness for FSHD everywhere you go! You can also post selfies on social media sporting a shirt and increase worldwide awareness with the hashtag #WorldFSHDDay!
The 2023 World FSHD Day Radio Show
To celebrate World FSHD Day, we will be releasing ten short-form interviews throughout the day! Host Tim Hollenback will interview a variety of guests, and new mini-episodes will be made available all day long. Make sure to follow us on Facebook and subscribe to our YouTube channel so you catch all of the episodes! The episodes will also be available on your favorite podcast app.
World FSHD Day Toolkit
Check out our Social Media Graphics
Ways to support World FSHD Day
- Change your social media profile picture to an orange slice selfie.
- Host a local event to celebrate the day. Invite your community to gather for a picnic, cocktail party, dance party, a viewing party see your local landmark lit up in orange (see below). Cut a bowlful of orange slices and take a group selfie! Share event announcements and photos on social media with #WorldFSHDDay.
- Ask your local Department of Public Works to Light the Night Orange. Is there a local landmark that would look great in orange? In Boston, MA, the famed Zakim Bridge is illuminated orange every June 20th in support of Wold FSHD Day! And now in Atlanta, GA, the King & Queen Buildings are illuminated orange to raise awareness. See below for a template letter which you can use to craft your own request. Be sure to take photos of your orange landmark and post them on social media!
- Make it official: Ask your government to recognize World FSHD Day. Write to your city, state, and national governments with a request to proclaim June 20th as FSHD Awareness Day. Please find a sample letter below that you can use.
- Join the Facebook Challenge. Help raise awareness and funds by joining the Orange Slice Selfie Challenge! Each member of our team will post a new selfie every day from June 14th through June 20th. All participants will receive a free "I am stronger than FSHD" T-shirt. Head here to learn more and join us as we spread the word about FSHD!
What is an Orange Slice Selfie and how do I do it?
Slice, smile and snap! Taking part in our Orange Slice Selfie campaign is just that simple. Though each selfie includes the classic orange slice in place of a smile, what makes each one special is what you add to it. Grab your friends, family or pets and help us to bring awareness to FSHD and the FSHD Society. Don’t forget to include #WorldFSHDDay in your post!
World FSHD Day Around the Globe
World FSHD Day is a global effort. The FSHD Society supports international efforts to raise awareness of FSHD through the World Alliance and Project Mercury.