Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
Observed on June 20, World FSHD Day is a global movement to raise awareness of Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, along with their families and friends, flood social media with orange slice selfies, light up landmarks in orange, and share stories to bring visibility to FSHD.
World FSHD Day is an international effort. The FSHD Society collaborates with partners around the world, including the World Alliance and Project Mercury, to amplify awareness and drive change.
The first World FSHD Day was celebrated on June 20, 2016. Three years earlier, brothers Marco and Sandro Biviano traveled from their home on Lipari, Italy to Rome to advocate for better access to medical care. After 700 days of demonstrations, the Biviano brothers convinced the Italian government to fund a telemedicine system and home care for Italian citizens living with FSHD. In addition, the Italian government designated June 20th FSHD Day. This date honors the birthday of the Biviano siblings’ mother.
Fabiola Bertinotti (FSHD Europe) shared the Biviano’s’ story during the 2015 FSHD Champions Summit and the idea for World FSHD Day was born. You can read the entire story in this blog post (2018).
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!
Buy World FSHD Day Attire!
Smiles are a simple means of creating connection; yet for over 1 million individuals living with FSHD, facial muscle weakness often leads to an inability to smile. Playing on the childhood snack of orange slice “smiles,” the Orange Slice Selfie Campaign raises awareness about the everyday effects of FSHD.
On June 20th, you are encouraged to post selfies using orange slices in place of your smile.
Feel free to copy and paste the below text for use in your own posts!
Feel free to copy and paste the below text for use in your own posts!
To make World FSHD Day posts easy to find, we recommend using the following hashtags with your posts:
#WorldFSHDDay, #FSHD, and #CureFSHD
As possible, please stick to these hashtags to help amplify awareness. Additionally, please use Title Case when typing out hashtags to increase their visual accessibility.
Title Case: #WorldFSHDDay
All Lower Case: #worldfshdday
Case Mixture: #worldFSHDday
If you would like to use additional hashtags, we recommend:
#FSHD, #Neuromuscular, #MuscularDystrophy, #FacesOfFSHD, and #RareDisease
Post your own orange slice selfie or use one of these pre-made graphics! Click each link to access a downloadable image.
To download an image onto your computer: right click the image and click “Save Image As.”
To download an image onto your phone: click and hold the image then click “Save to Camera Roll.”
Profile Picture Frames are a great way to show your support for a cause. Recent changes to Facebook’s profile frame policies limit the frames available through the Facebook app and web browser. Users interested in adding a frame to their profile picture can make a few easy edits to their photo using Pixlr, Adobe, Canva, or a similar web-based photo editor, upload the new image, and show their support for World FSHD Day.
How to Add a Frame to Your Profile Picture (Web-Based)
The FSHD Society created five frames which can be easily edited onto your profile picture and used across social media site. Please download the frame you want to use and follow the editing instructions in the Profile Picture Frames section.
To download a frame to your computer: Right click the frame and then click “Save Image As.”
To download a frame to your phone: Click and hold the frame then select “Save to Camera Roll.”
Instagram includes a feature called Cutouts which allows users to turn photos into custom stickers for use in their Stories. The Cutouts feature is only available in the Instagram app.
NOTE: Cutouts can only be used with one account and cannot be shared between accounts. If you have multiple accounts, or someone wants to use the same cutout, the same picture will need to be used to create the Cutout while logged in to each account.
Please follow the instructions below to create and add a Cutout to your Instagram Story.
Instagram integrates with Giphy to allow users to add GIFs to their Stories. The FSHD Society created a set of custom GIFs for World FSHD Day.
Instagram includes a feature called the “Add Yours” Template. This template allows users all around the world to create a collective story by responding to a prompt or question. For example, “Last photo of your pet.” The Add Yours feature is only available in the Instagram app.
The FSHD Society will create a custom Add Yours template for World FSHD Day to collect orange slice selfies. Throughout the day, we will highlight selfies submitted through the template. To participate, on June 20th, please:
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 World FSHD Day! And now in Atlanta, GA, the King & Queen Buildings are illuminated orange to raise awareness.
Use the provided template letter to craft your own request. Be sure to take photos of your orange landmark and post them on social media! Click here for the Letter Template (Word Doc) >>
Social Media Post Suggestions
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.
Use the provided template letter to craft your own request. Click here for the Letter Template (Word Doc) >>
Social Media Post Suggestions:
