A rare disease, by definition, will affect fewer than 200,000 people in the United States. However, in total, all rare diseases combined affect close to 30 million. That’s almost one in ten of us.
And, while many organizations work to raise awareness and research funds for a specific rare disease year round, this month, the Friedreich’s Ataxia Research Alliance (FARA), an organization battling to find a cure for Friedreich’s Ataxia, is encouraging everyone across the country to come together for an annual, world-wide campaign: “Move YOUR Way” on National Rare Disease Day.
Rare Disease Day was first observed in Europe in 2008 by the European Rare Disease Organization (EURORDIS) on the last day of February. In 2009, EURORDIS invited the National Organization for Rare Disorders (NORD) to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Rare Disease Day was designed to unite those who are affected by rare diseases; generating greater awareness and encouraging support from the public and decision makers alike. In 2013, more than 70 countries participated and, through social media, the awareness and participation had an even broader reach.
For the second year, FARA, an organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia (FA), will recognize Rare Disease Day with their virtual “Move YOUR Way” campaign on Facebook. The initiative will highlight the importance of staying active, which can help in staving off the progressive effects of many rare diseases and could help to prolong the lives of those affected.
How to participate:
- Decide how you want to move. Cycle, use your stander, run, dance, walk, roll, yoga, cheer…anything.
- Decide who is moving with you. Yourself, family, friends, co-workers, school, gym, community groups…anyone.
- Print and wear your bib number. Print the attached bib or visit http://curefa.org/_pdf/MoveYourWay2014-bib.pdf to download online.
- Share Photos. Take pictures moving your way (and wearing your bib) and post to http://www.facebook.com/pages/Move-YOUR-Way-for-Rare-Disease-Day/332770276837976 along with your story.
“Rare Disease Day is an opportunity to educate the public about just how many people are affected by rare diseases and the need for increased attention and funding,” says Jennifer Farmer, Executive Director of FARA. “Joining with other rare disease organizations recognizing Rare Disease Day, we are hoping that the ‘Move YOUR Way’ initiative will bring that awareness and celebrate all of the ways we move.”
The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia. FA is a rare, progressive and life-shortening neuromuscular disease for which there is no known treatment or cure. About one in 50,000 people in the United States have Friedreich’s ataxia. For more information, visit: www.curefa.org.