Rare Disease Day Rare Talent Challenge

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

• Talent Video Compilation
• Talents and Skills from Around the World
• Food Taster
• Ventriloquist
• Magician
• Singer

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

嗨，我是 ___________________。.

• 我患有面肩胛肱肌营养不良症，简称 F--S--H--D。.
• (或者）我的 _____________ [我关心的人] 患有面肩胛肱肌营养不良症，简称 F--S--H--D。.
• (或者）我来这里是为了提高人们对面肩胛肱肌营养不良症（Facio Scapulo Humeral muscular dystrophy，简称F--S--H--D）的认识。.

这是一种罕见的遗传病，会削弱肌肉。.

人们会失去行走、做简单工作或眨眼的能力。F--S--H--D甚至会让你失去笑容。.

有些人会出现呼吸困难，从而缩短生命。.

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

为了与这种疾病作斗争，我们必须提高认识。.  

In honor of Rare Disease Day February 28^第, 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.