International Ataxia Awareness Day On Tap for Sept. 25
Supporters globally are gearing up for International Ataxia Awareness Day, observed annually on Sept. 25 to raise the profile of a group of progressive neurological disorders that includes Friedreich’s ataxia (FA).
Patients, caregivers, and supporters will share stories on social media, advocate on behalf of the ataxia community, raise funds, join in a virtual walk, and secure local U.S. government IAAD proclamations — all designed to educate others about ataxias such as FA, which is caused by mutations in the gene FXN. FA usually begins in childhood or adolescence and gets worse with age, causing the loss of control of body movements.
The upcoming events and activities aim to heighten awareness among the general public, in addition to lawmakers, industry representatives, public authorities, researchers, and health professionals.
The effort is being led by the National Ataxia Foundation (NAF), an organization that works to accelerate the development of treatments and a cure while helping to improve patients’ lives.
“International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and ataxia organizations around the world to help shed light on this rare disease,” the organization states on its campaign website. “NAF is committed to leading the way on this outreach effort, but we need your help. We encourage individuals and disease organizations to join us by planning events and/or awareness campaigns for IAAD.”
To help call attention to ataxia and those it affects, NAF and the Friedreich’s Ataxia Research Alliance are asking U.S. participants to support the third United Against Ataxia Hill Day on Sept. 29. On that day, a group of advocates will meet remotely with some congressional members to discuss issues that are important to the ataxia community.
“It will be a virtual event so every U.S. resident, regardless of where you are, can participate,” the announcement said. “There is no cost or need to travel. Instead, you can speak to your congressional members right from the comforts of your home.”
Another way to participate globally in this Awareness Day is by posting personal stories or information about ataxia on social media, using the hashtag #IAAD21. Supporters also may follow NAF on Facebook and Twitter, and share the organization’s IAAD posts.
The foundation also is taking the opportunity to invite supporters to participate virtually in Walk N’ Roll, the organization’s largest grassroots national fundraising campaign, on Oct. 16. Every year, thousands of individuals come together to support NAF’s mission, have fun, and win prizes.
There are downloadable IAAD Facebook and Twitter graphics available for supporters worldwide, plus a banner, ataxia brochure, and information about how to get a local IAAD proclamation or resolution.
“Planning an event or activity is a great way to raise awareness and get others involved in taking action,” the organization states. “September 25 will help build strength of the awareness effort and draw media attention.”
The September date marks the second time in the year that FA advocates will work to raise awareness of the rare inherited disease. Each year in May, supporters focus specifically on their specific type of the disease during Friedreich’s Ataxia Awareness Month. Organizers of both campaigns say there can never be too many efforts to educate others about any of the ataxia disorders.
Internationally, the Great Britain and Ireland organization Ataxia UK is contributing to this year’s overall campaign by asking supporters to volunteer to “wheel, walk or run” to their local GP and deliver them a pack with medical guidelines developed by Ataxia UK and neurologists to improve the diagnosis and management of ataxia.