Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD 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. 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. It is meant to start conversations! With your support, we have reached tens of millions of unique accounts. Visit the World FSHD Day Toolkit (click on link below) for a wealth of ideas, templates, logos, etc.
Ways to support World FSHD Day
- Use the World FSHD Day logo as your social media avatar. You can download the logo from the link below and upload it to your Facebook, Twitter, and Instagram accounts.
- 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” on June 20th. Is there a local landmark that would look great in orange? Here are just a few places that are lighting up:
>>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.