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. This year, we'll be celebrating with the World FSHD Alliance at the Global Summit for FSHD. For one day, we'll bring together stakeholders from 19 countries and 23 organizations, both online and in person, for the finale event in our series of conferences in June in Orlando, FL.
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!)
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.
With 2022 FSHD Connect bumping up against World FSHD Day on June 20th, you may be interested in purchasing an official World FSHD Day T-shirt to wear at the conference. Think about the opportunities to take selfies and group photos there to post on social media and raise worldwide awareness!
The 2022 World FSHD Day Radio Show
To celebrate World FSHD Day, we will be coming to you live from Orlando, checking in with World FSHD Alliance members in attendance at the Global Summit!. We'll stream live to Facebook, so be sure to like and follow us at Facebook@FSHDSociety
World FSHD Day Toolkit
Ways to support World FSHD Day
- Use the World FSHD Day logo as your social media avatar. You can download the logo HERE 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. 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.
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!