'We Believe' National Social Media Campaign Sheds Light on Rare Disease
National (PRWEB) May 01, 2014 -- What do you believe in? What drives you? What gets you up and out of bed in the morning? Is it money? Is it family? Is it hope? For families living with a loved one fighting Friedreich’s ataxia (FA), it is the belief that one day there will be a treatment and a cure for this debilitating, life-shortening, degenerative neuro-muscular disorder.
Meet Ryelee Burris. She is 8 years old. She was diagnosed with FA when she was 5 years old. Ryelee sat in her wheelchair at the starting line of cycling fundraiser to benefit the Friedreich’s Ataxia Research Alliance (FARA) holding a sparkly sign that said, "Cure FA. We believe." Ryelee believes in a cure. Like the thousands of people living with FA, she hopes and believes. But she needs more than that, she needs action.
Help FARA raise awareness by joining us in a new social media initiative leading up FA Awareness Day on May 17, 2014 called “We Believe.” Complete the downloaded sign telling us what you believe in and take a photo with it: http://curefa.org/_pdf/FA-Awareness-Day2014.pdf.
Then, upload your pictures at: https://www.facebook.com/CureFA.
To learn more about Ryelee’s story go to https://www.facebook.com/pages/The-Ryelee-Burris-Story/599141860128996.
FARA will be accepting family friendly content submissions from now through FA Awareness Day Saturday, May 17. Submissions will be posted the week leading up to FA Awareness Day from Sunday, May 11- Saturday, May 17.
We encourage participants to post their photo on their own Facebook page as well the status, "We believe _____________________. Friedreich's Ataxia Awareness Day is on May 17th. Visit curefa.org to learn more. Together we will cure FA!"
About Friedreich’s Ataxia Research Alliance
The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances.
For more information about FARA, visit them online at http://www.curefa.org.
Jennifer Vickery, National Strategies Public Relations, (813) 865-3093, [email protected]
Share this article