Many people throughout the United States have never heard of ataxia, which is why the National Ataxia Foundation, along with other ataxia organizations throughout the world, have declared Sept. 25 “International Ataxia Awareness Day.”
An estimated 150,000 people in the United States are affected by ataxia, a group of often fatal, rare, degenerative neurological disorders. Symptoms often include impairment of coordination, hearing, vision and speech. Too often ataxia strikes children and young adults. At this time, there is no effective treatment or cure for ataxia.
“Ataxia can affect anyone at any time,” said Michael Parent, executive director of the National Ataxia Foundation. “The disorder can be caused by either a recessive or dominant gene. There are also sporadic forms of ataxia that have no known genetic link or family history. Many times, people do not know that they carry an ataxia gene until they have children displaying signs of ataxia.”
That is why the National Ataxia Foundation was established in 1957 . The foundation continues its efforts to help ataxia families through research, education and patient services.
Kim Brown knows firsthand the effects of ataxia. She was diagnosed with ataxia in 2000. “Ataxia impacts every aspect of your life. Simple tasks such as tying your shoes, getting ready in the morning or eating can be a struggle. As the disease progresses, things that you could do six months ago are impossible today.” In dominant forms of ataxia, each child born has a 50-50 chance of developing the disease. In the case of recessive forms, each child born has a 25 percent chance of getting the disease.
To find out more about ataxia, visit www.ataxia.org. You can also write the foundation at 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752 or call (763) 553-0020