World FSHD Day

Celebrate World FSHD Day—June 20

A global moment of recognition and community

What is World FSHD Day?

World FSHD Day is held every year on 20 June. It is a global day of awareness dedicated to Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, their families, friends, and supporters around the world come together to increase understanding, share experiences, and help others learn about the condition.

Communities take part in a variety of activities. These can include sharing personal stories, posting orange slice selfies, lighting landmarks in orange, or gathering with others in person or online. It is a day for connection, visibility, and support across countries and cultures.

Why 20 June

The first World FSHD Day was celebrated in 2016. The date was chosen to honor the advocacy work of Marco and Sandro Biviano in Italy. Their efforts led to improved services for people living with FSHD in their region, and 20 June was recognized as FSHD Day in Italy. What began as a local milestone has grown into a global day of awareness and solidarity.

How you can take part?

Anyone can participate in World FSHD Day. Whether you live with FSHD, care for someone who does, work in research or healthcare, or simply want to show support, you are welcome to join in. A few ideas include:

  • Take an orange slice selfie on 20 June and share it on social media with the hashtag #WorldFSHDDay. The orange slice is a simple, recognizable symbol of awareness.
  • Update your social media profile image or cover photo to show support.
  • Encourage a local building, monument, or community space to light up in orange.
  • Join or organize a local gathering or virtual event.
  • Use the images and sample messages from the World FSHD Day toolkit to help spread the word.

The role of the World FSHD Alliance

The World FSHD Alliance supports this global day of awareness by helping organizations, leaders, and advocates share resources, ideas, and activities that can be used in different countries. The aim is to create a shared sense of purpose and encourage participation through both local and global efforts.

Across the year, the Alliance works with partners to continue the spirit of World FSHD Day by strengthening community connections, encouraging collaboration, and supporting awareness efforts around the world.

View an interactive map of participating countries here.

What is World FSHD Day?

World FSHD Day is held every year on 20 June. It is a global day of awareness dedicated to Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, their families, friends, and supporters around the world come together to increase understanding, share experiences, and help others learn about the condition.

Communities take part in a variety of activities. These can include sharing personal stories, posting orange slice selfies, lighting landmarks in orange, or gathering with others in person or online. It is a day for connection, visibility, and support across countries and cultures.

Why 20 June

The first World FSHD Day was celebrated in 2016. The date was chosen to honor the advocacy work of Marco and Sandro Biviano in Italy. Their efforts led to improved services for people living with FSHD in their region, and 20 June was recognized as FSHD Day in Italy. What began as a local milestone has grown into a global day of awareness and solidarity.

How you can take part?

Anyone can participate in World FSHD Day. Whether you live with FSHD, care for someone who does, work in research or healthcare, or simply want to show support, you are welcome to join in. A few ideas include:

  • Take an orange slice selfie on 20 June and share it on social media with the hashtag #WorldFSHDDay. The orange slice is a simple, recognizable symbol of awareness.
  • Update your social media profile image or cover photo to show support.
  • Encourage a local building, monument, or community space to light up in orange.
  • Join or organize a local gathering or virtual event.
  • Use the images and sample messages from the World FSHD Day toolkit to help spread the word.

The role of the World FSHD Alliance

The World FSHD Alliance supports this global day of awareness by helping organizations, leaders, and advocates share resources, ideas, and activities that can be used in different countries. The aim is to create a shared sense of purpose and encourage participation through both local and global efforts.

Across the year, the Alliance works with partners to continue the spirit of World FSHD Day by strengthening community connections, encouraging collaboration, and supporting awareness efforts around the world.

World FSHD Day Toolkit

The below Toolkit contains resources for social media posts, World FSHD Day proclamations, and letter writing campaigns. It also contains poster templates and an email signature. Click each link to access editable Canva projects.

If you need additional resources or materials, please reach out to An Sasala, FSHD Society Marketing & Communications Manager at An.Sasala@fshdsociety.org.

Posters & Professional Materials

Social Media

Orange Slice Selfies

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!

  • 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 🍊😀

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!

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

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) 

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

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. 

  1. Make sure to have the picture(s) you want to turn into a cutout saved to your phone.
  2. Login to the Instagram app.
  3. Click the + button in the bottom middle of your screen.
  4. Select the option to post to your story. Click Create.
  5. Click Add in the top right corner and then click Sticker.
  6. In the sticker menu, click Cutout.
  7. 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.
  8. Position the cutout where you want it in your Story.
  9. Add additional Cutouts, stickers, text, and etc.
  10. Publish to your Stories. 

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.

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

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 >>

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! 🍊😀

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 >>

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! 🍊😀

Join Us in World FSHD Day

We invite you to take part on 20 June. Share your story in the way that feels right for you. Wear orange, raise your voice, and help others learn about FSHD. Together we can increase understanding and help ensure that no one feels alone on their FSHD journey.