INTERNATIONAL ATAXIA AWARENESS DAY
Every year on September 25th, International Ataxia Awareness Day sheds light on this rare disease. The day also inspires Ataxia organizations and individuals around the world to support action towards a cure.
Ataxia is defined as the loss of full control of bodily movements. In the medical world, ataxia is a degenerative disease of the nervous system. Symptoms include poor coordination, a tendency to stumble, difficulty with fine motor tasks, and changes in speech. Damage to the cerebellum causes the condition. A fist-sized portion of the brain located near the brain stem, the cerebellum controls muscle coordination.
Various conditions cause damage to the cerebellum:
- Cerebral Palsy
- Brain degeneration
- Multiple sclerosis
- Vitamin deficiencies
In some cases, misuse of alcohol or certain medications damages the cerebellum. There are various forms of ataxia. One such type, called spinocerebellar ataxia (SCA), is hereditary. For some with ataxia, there is no known cause. When a doctor can’t determine the cause of the condition, it is called idiopathic ataxia.
This rare condition affects 150,000 people in the United States. On a global scale, ataxia affects 26 out of every 100,000 children, and there is no cure for ataxia. However, symptoms can be managed. Treatment to manage symptoms often involves medications, physical therapy, and occupational therapy. Those who lose mobility due to ataxia may need a mobility aid, such as a walker or wheelchair.
Ataxia patients usually have a shortened lifespan. This is especially the case for those who acquired ataxia as a child or young adult. Some people with ataxia, however, have lived into their 60s and beyond.
HOW TO OBSERVE #AtaxiaAwarenessDay
The National Ataxia Association organizes a variety of events for this day. Some of these events include presentations and informational seminars to educate others about ataxia. People affected by ataxia are encouraged to share their personal stories with others. This is also a day to start preparing for the Walk N’ Roll to Cure Ataxia fundraiser, which is held each fall.
You can do your part by using #AtaxiaAwarenessDay on social media.
INTERNATIONAL ATAXIA AWARENESS DAY HISTORY
In 1999, the National Institutes of Health (NIH) cosponsored the International Friedreich’s Ataxia Conference. The other participating organizations at the conference included the Office of Rare Diseases and the Friedreich’s Ataxia Research Alliance (FARA). The conference was the springboard for the first International Ataxia Awareness Day on September 25, 2000. The National Ataxia Foundation (NAF) organizes and promotes the event each year. The NAF was established in 1957 and is based in Minneapolis, MN.