Rare Disease Day Rare Talent Challenge

What’s your rare talent?

This year, to celebrate Rare Disease Day, taking place on Wednesday, February 28, we will be hosting a viral photo and video challenge! Share your rare talents and help us bring the FSH Society into the larger conversation around rare diseases. Here’s how it works:

  1. Decide on a rare talent–whether you can sing Puccini, juggle flaming tennis balls, sculpt Mickey Mouse out of soap bubbles, or do something else sublime or ridiculous–we want to see your talent! The more creative and fun, the better.
  2. Share a video or photo of your rare talent via social media using #FSHDRareTalent
  3. Tag three friends asking them to share their rare talents via social. In lieu of sharing, friends can also donate $10 to the FSH Society to advance research for treatments.
  4. Spread the word! The important thing is to get people participating and talking. The more people who share their talent, the more awareness for the FSH Society and the closer we are to a cure!

Below, we’ve included a few resources to help you get started.

Rare Talent Examples

Sample Video Script/Photo Commentary for your social media posts:

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.

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.

Most people have never heard of F-S-H-D, as it is a rare form of muscular dystrophy.  

To fight this disease, we MUST raise awareness.  

In honor of Rare Disease Day February 28th, I will be sharing a rare talent of mine, with the hopes of showing that the rare disease F-S-H-D, like rare talents, should be better known.

[SHARE RARE TALENT]

Now, I challenge _____________ [CHOOSE THREE PEOPLE] to share their rare talent via video or photo, or make a $10 donation to the F-S-H Society to help advance research to find a cure.

Be sure to spread the word and your talent on Twitter, Instagram, or Facebook with the hashtag #FSHDRareTalent, and tag the F-S-H Society [@FSHSociety] in your post.

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