World FSHD Day

Celebrate World FSHD Day on June 20th

What is World FSHD Day?

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 History of World FSHD Day

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).

Purchase a World FSHD Day T-Shirt!

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!

World FSHD Day Toolkit

Orange Slice Selfies & Social Media Posts

Orange Slice Significance

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.

Save the Date Posts

Feel free to copy and paste the below text for use in your own posts!

Save the Date: June 20 is #WorldFSHDDay! Join me (and my community) in raising awareness about #FSHD, one of the most common forms of muscular dystrophy. To learn more, check out [new url for 2.2.1.4 World FSHD Day]
Did you know #FSHD can weaken facial muscles and make it difficult to smile? On June 20, I’m raising awareness about FSHD by sharing an Orange Slice Selfie! Share YOUR Orange Slice Selfie to show your support for #WorldFSHDDay

Posts for June 20th

Feel free to copy and paste the below text for use in your own posts!

Today is #WorldFSHDDay! To unite our community & raise awareness about this rare disease, I’m sharing my Orange Slice Selfie. Join me by sharing yours. Make sure to use hashtags! #CureFSHD #FacesOfFSHD
Today is #WorldFSHDDay! I’m sharing my Orange Slice Selfie to raise awareness about #FSHD, the most common form of muscular dystrophy. FSHD weakens muscles, making it difficult to smile. Grab an orange slice and share your selfie! Don’t forget to use #WorldFSHDDay!
Share an orange slice, and a smile, in celebration of #WorldFSHDDay. #FSHD, the most common form of muscular dystrophy, can weaken facial muscles, making it difficult to smile. Join me in raising awareness about FSHD and share your own selfie using #WorldFSHDDay!

Hashtags

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

Sample Graphics

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.”

World FSHD Day Logo
FSHD Society World FSHD Day Graphic
Orange Peel Graphic
World FSHD Day General Info Graphic

Social Media Enhancements

Profile Picture Frames

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)

Select the photo you want to use as your profile picture. Make sure it is downloaded to your phone or computer.
Download the frame you want to use from our World FSHD Day Frame Collection.
Using your web browser, navigate to a free photo editor or design site such as Canva, Adobe, or Pixlr.
Upload your profile picture and the frame.
Adjust the placement of the frame as needed.
Download the edited picture.
Upload the edited picture to Facebook, Instagram, LinkedIn, and any additional social media platforms where you want to use a profile picture frame.

Frame Collection

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 Cutouts

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.

Make sure to have the picture(s) you want to turn into a cutout saved to your phone.
Login to the Instagram app.
Click the + button in the bottom middle of your screen.
Select the option to post to your story. Click Create.
Click Add in the top right corner and then click Sticker.
In the sticker menu, click Cutout.
Upload or select the picture you want to use for your Cutout. Use either the auto or manual select tool to designate the part of the photo that will become your Cutout.
Position the cutout where you want it in your Story.
Add additional Cutouts, stickers, text, and etc.
Publish to your Stories.

Custom Gifs

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.

Make sure to have the picture(s) you want to turn into a cutout saved to your phone.
Login to the Instagram app.
Click the + button in the bottom middle of your screen.
Select the option to post to your story. Click “Create.”
Click Add in the top right corner and then click Sticker.
In the sticker menu, click GIF.
Search “FSHD” or “World FSHD Day” to locate our selection of FSHD and World FSHD GIFs.
Position the GIF where you want it in your Story.
Add additional GIFs, stickers, text, etc.
Publish to your Stories.

Add Yours (Instagram)

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:

Take your orange slice selfie(s).
Login to Instagram and navigate to @FSHDSociety.
Click on the World FSHD 2024 highlight under our profile.
Click the Add Yours button and follow the template instructions.
Optional: Add text to the image letting us know where you are.
Example: Cleveland, Ohio; Melbourne, Australia; and etc.
Publish your Add Yours response to your story and join the movement!

Letter Writing Campaigns

Light It Up In Orange

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

On June 20, CITY is raising awareness for World FSHD Day by lighting BUILDING orange! Stop by at TIME to share a photo.
Today is #WorldFSHDDay! To unite our community & raise awareness, BUILDING will be lit orange for those with FSHD. Stop by to share a photo for #WorldFSHDDay!

World FSHD Day Proclamations

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:

CITY/STATE/COUNTRY has proclaimed June 20th official FSHD Awareness Day in honor of all the families in our community who live with Facioscapulohumeral muscular dystrophy. Thank you [name of official] for your support! #WorldFSHDDay
Today is #WorldFSHDDay! To unite our community & raise awareness, CITY/STATE/COUNTRY has proclaimed June 20th the official FSHD Awareness Day!