August is Aicardi Syndrome Awareness Month

Lace up your hiking shoes and head out to your favorite trail this August. But, before you do, log onto http://www.aicardisyndrome.org/hikeathon/. There you can join a growing number of people walking to assist families struck by the little-known disease, Aicardi Syndrome. Named after the man who discovered this disease in 1965, French Neurologist, Dr. Jean Aicardi, there are only 300 to 500 known cases of Aicardi Syndrome worldwide. Though researches believe a damaged X chromosome is the culprit, the cause of Aicardi Syndrome is not definitively known. Like most people who know about Aicardi Syndrome, I discovered Aicardi Syndrome because it hit close to home: a friend’s infant was diagnosed. Upon talking to people, I discovered that, amazingly, another friend’s daughter also lived with Aicardi Syndrome. So, 300 to 500 isn’t such a minute statistic after all. For this reason, I’ve joined the small number of people striving to educate the public on Aicardi Syndrome.

Aicardi Syndrome strikes females (only two boys have ever been diagnosed) and usually is detected before a child reaches 5 months. Once diagnosed, the prognosis is a frustratingly wide spectrum. A child diagnosed with Aicardi Syndrome will inevitably develop seizures, but the extent of the seizures will vary. Because Aicardi Syndrome is a neurological disorder, most children with Aicardi develop mild to severe mental retardation. However, some develop expressive communication and function in school. The range is that dramatic. In terms of motor skills, there is also a broad spectrum. While some children cannot walk nor talk, others can ride horses and swim. What is particularly difficult for parents of children with Aicardi Syndrome is that girls with severe cases have often died suddenly of pneumonia, other pulmonary complications, or even for no detectable reason at all. In addition, for children with Aicardi Syndrome, though some girls do live through their second and third decade of life, many do not live past their first decade. For a parent, this is probably the most difficult part of the disease. That is why the Aicardi Syndrome Foundation is so important; it provides invaluable support to families worldwide.
If you hike, walk, or want to do something to help others this month, think about walking to raise money for the Aicardi Syndrome Foundation. The Aicardi Syndrome Foundation is a not-for-profit organization that according to their website, “provides funds for the purchase of medical and adaptive equipment for affected daughters, publication and distribution of the Aicardi Syndrome Newsletter, and contributes to ongoing research into the causes of Aicardi Syndrome.” What I especially love about this Foundation is that one hundred percent of supported funds go to the foundation. Volunteers staff it. I encourage you to explore the site yourself at http://www.aicardisyndrome.org. Sure, the information is interesting, and for a parent of a child with Aicardi – a godsend. But, most importantly, the stories and pictures of these girls and their families are compelling and loving.

So, why don’t you consider taking some time to hike off dessert and support the families of children with Aicardi Syndrome? This first fundraising hike-a-thon for Aicardi has already collected over $1,346 for the Aicardi Foundation, but so much more is needed. It is very easy to sign up for and orchestrate. I signed up in just 5 minutes and the hiking has been fun. Just, commit to a certain number of miles on a hike anywhere in the world and ask your friends and coworkers to log on and donate to the cause. Donations can either be made by mile or for a set amount of money. Participants can join as late as August 31st and donate until October 1. Don’t forget to log your miles onto the site when you’ve completed your walk.

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