Help us promote World FSHD Day with a selfie video!


World FSHD Day

Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. Orange Slice SmileRaisingAware

Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is make a short video of yourself sharing the message using the script below. Feel free to adapt the script to your own style and voice. Try to get good audio quality, then send your video by DropBox to

We will compile the videos into one great video and spread it out over all of our electronic channels! The deadline to send us your video is Saturday, May 13th 2017.  

Questions? Email June at

Download the sample script here, or scroll down to view it below.

Thank you in advance for helping us spread the word about World FSHD Day, and to raise awareness of FSHD!


Hi, I’m ___________________.

  • I have Facio Scapulo Humeral muscular dystrophy, or F-­‐S-­‐H-­‐D.
  • (OR) My _____________ [someone I care about] has Facio Scapulo Humeral muscular dystrophy, or F-­‐S-­‐H-­‐D.
  • (OR) I’m here to raise awareness for Facio Scapulo Humeral muscular dystrophy, or F-­‐S-­‐H-­‐D.

One in 8,000 people have F-­‐S-­‐H-­‐D.

That’s nearly one million men, women, and children around the world.

It’s a rare genetic disease that weakens your muscles.

People can lose the ability to walk, do simple tasks, or blink. F-­‐S-­‐H-­‐D can even rob you of your smile.

Some develop difficulty breathing, which can be life-shortening.

F‐S­‐H­‐D can be passed on to your children.  

Most people have never heard of F-S-H-D.  

To fight this disease, we MUST raise awareness.  

This June 20th is World FSHD Day. Orange is our official color.

So, this June 20th, take an orange, cut out a slice, and give yourself an orange-slice smile!

Post your selfie on Twitter, Instagram, or Facebook with the hashtag World FSHD day [#WorldFSHDday].  

It’s easy! SLICE. SMILE. SNAP. POST. [Demonstrate doing this.]

THANK YOU for making a difference!



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