- Posted September 17, 2013 by
Olongapo City, Philippines
September 25 is International Ataxia Awareness Day
AUSTIN, TX – September 17, 2013 – Between one to two persons in every 100,000 globally are affected by ataxia—a group of degenerative neurological disorders characterized by impaired coordination of movement, vision, speech, hearing and other involuntary actions. In the US alone, over 150,000 people are affected by ataxia.
But despite the numbers, ataxia is still considered a rare disorder. Its rarity makes ataxia obscure to many, with some even mistaking the condition with drunkenness. In fact, the condition used to be known derisively as “Drunken Sailor Syndrome”. A cure for ataxia remains elusive.
That is why support organizations such as ataxia patient communities Living with Ataxia, American Ataxia Networking and Ataxia-UK have adopted September 25 as International Ataxia Awareness Day as proposed by the National Ataxia Foundation. The aim of the declaration is to raise awareness and understanding of ataxia.
“Having a movement disorder is hard. Just think how much you move without giving it a second thought and having to watch every step. It wears me out,” said John Colyer, a patient who has been suffering from cerebral ataxia living in New Jersey. “I felt useless and broken — both physically and emotionally.”
After Colyer had a knee surgery due to a fall, he came across Ben’s Friends—an organization which offers online support communities for people struggling with rare diseases and disorders. “I joined the site for ataxia, and for the first time ever, I found others going through the same issues.”
Ben’s Friends Patient Communities helps raise awareness on rare diseases by building online support community sites and promoting the welfare of patients through research and funding. Currently, Ben Munoz and his team of volunteers are moderating 33 rare disease patient communities for over 35,000 members worldwide—including the Living with Ataxia online community.
People can help raise awareness about ataxia by telling their friends about it, sharing links to ataxia material such as this infographic (http://bit.ly/18wH3eT), or by asking local and state governments to adopt September 25 as International Ataxia Awareness Day.
For more information, visit http://www.livingwithataxia.org.
About Ben’s Friends
BensFriends.org is a mission-driven company with a network of online communities that provide support for people struggling with rare diseases. It was founded in 2006 by Ben Munoz after he suffered a serious stroke at age 29 caused by a rare condition called an AVM. During his ordeal, Ben realized how online communities could help support those suffering alone.
Since then, Ben and his friends have started 33 online patient support communities that help over 35,000 patients and their families around the world.