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FARAFARA Cure FA

2017 Move Your Way for Rare Disease Day

MYW2017 blog

Rare Disease Day aims to raise awareness around the world of rare diseases and their impact on patients' lives. To join these efforts, let's tell the world about FA! Here's an updated take on the Move Your Way for Rare Disease Day Campaign...

We're asking the FA community to submit a short (30 second) video clip showing how you move your way living with Friedreich's Ataxia

 Moving Your Way could be how you get around your home, your chosen exercise, or a social activity. Be creative. Start the video by saying "I Move My Way for Rare Disease Day by ______." Show your activity. Then conclude your video by saying "350 million people worldwide live with a rare disease and I'm one of them. Rare Disease Day is February 28. To learn more visit curefa.org."

Please submit your videos to us via Dropbox by Monday, February 20.

These videos will be shared on FARA Facebook (be sure to follow!) beginning Wednesday, 2.22 - Tuesday, 2.28.

SHARE these videos and help us continue to increase awareness of Friedreich's Ataxia!

Questions? stephanie.magness@curefa.org

Check out this year's Move Your Way introduction video for some examples. THANK YOU!

2017MYW intro

Rare Disease Day is a worldwide awareness effort to draw attention to all rare diseases. Together, rare diseases affect millions of people. Join the National Organization for Rare Disorders, the Friedreich's Ataxia Research Alliance (FARA) and other advocacy groups around the world to show the general public and decision-makers that more support is needed for rare diseases like Friedreich's Ataxia.

#RareDiseaseDay2017 #MoveYourWay4Rare #CureFA

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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