The National Ataxia Foundation, an organization dedicated to improving the lives of those affected by ataxia through support, education and research, is counting down the days to the 16th Annual International Ataxia Awareness Day on September 25, 2015, which will help bring together ataxia organizations from all over the globe in the hopes to raise awareness and support for this group of rare, progressive disorders of the nervous system that affects one’s balance and coordination.
Ataxia is a group of rare and often fatal degenerative neurological disorders. An estimated 150,000 people in the United States are affected by ataxia. Symptoms are progressive and often impact coordination, hearing, vision, and speech. This malignancy affects both genders and all ages, but too often ataxia strikes children and young adults. At this time, there is no effective treatment or cure for ataxia.
“The National Ataxia Foundation was established in 1957 and is dedicated in serving ataxia families through research, education, and support services,” says Michael Parent, the Executive Director of the National Ataxia Foundation. Parent continued, “Ataxia can affect anyone at any time and is caused by either a recessive or dominant gene. There are also sporadic forms of ataxia which have no known genetic link or family history.”
Those interested to get involved can find a local NAF chapter and learn more about their planned activities by visiting the official website www.ataxia.org or by calling (763) 553-0020. The Foundation also offers NAF apparel through their online store, which whole proceeds go to the Foundation’s activities and programs.
A remarkable new tool in the world of genetic biology is being applied to study Friedreich’s ataxia. TALEN and CRISPR methodologies, which have been the subjects of recent patent battles, are powerful gene modifying techniques that can easily add or remove sequences to mimic the mutations that occur in Friedreich’s ataxia. Using these technologies, two laboratories in MRC National Institute for Medical Research and Kings College London created a new cellular model that provides a platform to study Friedreich’s ataxia disease progression.