Join NAF and others for a Virtual Event February 21- 28 &
Raise awareness in your local community for
Rare Disease Day
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 Disease (NORD), the National Ataxia Foundation (NAF), the Friedreich’s Ataxia Research Alliance (FARA), Parent Project Muscular Dystrophy (PPMD), and other advocacy groups around the world to show the general public and decision-makers that more support is needed for rare diseases like Ataxia. NAF invites you to join a virtual event and show the world how you move for Rare Disease Day.
Though Ataxia is a group of physically limiting neurological disorders, many in the Ataxia community fight the progressive effects of the disease by staying as physically active as possible. Some cycle on adaptive cycling equipment, others work out at the gym, and others work their muscles in the pool or in a stander. The week leading up to Rare Disease Day, from February 21st
, we want you to show the world how you move. A Move YOUR Way for Rare Disease Day
virtual event is posted on Facebook, and we invite everyone to post photos of themselves, family, friends, coworkers and classmates moving under their own power.
TOGETHER we MOVE to CURE ATAXIA.
How to participate:
- Each person decides how they want to move. This can be the person living with ataxia / or someone moving in his/ her honor.
Movement Suggestions: Cycle, Go to the Gym, Use your Stander, Run, Dance, Walk, Roll, Yoga, Cheer…etc
2. Recruit people to move with you. The more people involved, the more the effort grows. The more the effort grows, the more awareness is raised for rare diseases.
Family, Friends, Co-Workers, School, Gym, Community Groups…etc
3. To order your Move Your Way bib numbers (with the NAF logo) to wear during your activity, email Lori@ataxia.org
with your name, address and number of people participating.
5. Change your profile picture to the Rare Disease Day log and/ or Post your “Move Your Way” photo to your personal Facebook page along with one of these statuses:
a. “I am moving my way for Rare Disease Day”
b. “30 million people in America have a rare disease. I am one of them.”
c. “150,000 people in the United States have ataxia. I am 1 of them.”
If you are interested in getting your community or school involved and need assistance or if you have any questions please contact: Lori Shogren, Lori@ataxia.org