Intel and Facebook recently joined forces to roll out the Vote for a Cause competition. For those of you who have not heard of the competition yet, last month, Facebook users nominated non-profits that have a Facebook presence to compete for 50,000 in co-branded advertising courtesy of Intel.
Facebook users then voted for their favorites amongst those nominated and narrowed the field of competition to 32. The Top 32 will then be reduced, via voting, to 16 and then to 8, 4 and 2 before the winner is chosen on September 20th, 2009.
I have no idea how I heard about the competition, but I decided to take a look and see what non-profits were participating. To my delight, The Chiari Center Foundation is one of those in the competition (as well as placed in the Top 32).
I say delight because, let's be honest, people rarely even know how to pronounce Chiari, let alone know what the heck it is. That the Center Foundation is competing and doing so well did my little heart good. Alo was diagnosed with an Arnold Chiari Malformation when he was a day or two old.
A Chiari Malformation is one in which parts of the brain sit lower than they should, often descending into the spinal cavity and disrupting the flow of cerebrospinal fluid to the brain. Which part of the brain descends depends largely upon the type of Chiari malformation one has.
The Chiari Malformation that Alo has (type II) occurs when both the brainstem and tonsils of the cerebellum descend into the spinal cavity. In patients with a Type II Malformation, spina bifida myelomeningocele (spinal cord does not close properly, resulting in part of the spinal cord to poke through a hole in the back) and accompanying hydrocephalus (too much fluid on the brain), often result. In addition to these major concerns are a host of other symptoms and issues, including everything from dysphagia to vision problems to dyslexia.
At the time of Alo's diagnosis, we didn't know what a Chiari Malformation was or what it meant. Having dealt with it for the last four years, we've learned quite a lot. And we've also learned how little others know about the condition... doctors included.
It's not uncommon for us to recite Alo's medical history and diagnoses only to have a doctor ask us what Chiari is. During one appointment, my sister asked the doctor if they knew how far Alo's brainstem descended into his spinal cavity. The doctor wasn't even aware that they could measure it or that the level of descent could impact the severity of associated symptoms and problems.
Needless to say, educating others on Chiari has become something of a necessity for us. So, seeing the Chiari Center Foundation listed as one of the causes was a reason to celebrate around here because the sad truth is rare conditions and diseases rarely grab the attention of the public.
Organizations that deal with these conditions, including those that provide patient support, research or even education, are largely ignored when it comes time for us to rally behind a cause. Everyone has heard of the Susan G. Komen Foundation and the March of Dimes.. but before reading this, how many of you had heard about The Chiari Center Foundation or even knew that a condition called Chiari existed?
Probably not many. So, it's always a blessing when little known organizations that are doing good things receive recognition. It's an even bigger blessing when little known organizations that are doing good things receive the backing or support of large organizations as they work to fulfill their mission. And unfortunately, it just doesn't happen all that often.
Several states across the nation have declared September as Chiari Awareness Month. In keeping with that, I'd like to encourage everyone to spend a few minutes learning about Chiari Malformations. I'd also like to encourage you to take a few minutes to check out Vote for a Cause at Facebook. Even if you don't vote for the Chiari Center Foundation... I do hope you'll take thirty seconds and vote for one of the causes competing for much needed advertising support.
It may not seem like advertising support will make much of a difference, but it can. If the winning organization is listed on even a single Intel commericial... the name of that organization has reach more people in those 30 seconds than it would have otherwise. And for organizations, such as the Chiari Center Foundation, working on conditions and causes that fall outside of public awareness, as well as for the patients and families their dedication helps... that 30 seconds is a cause worth celebrating.
You can learn more about the Chiari Center Foundation at: http://www.chiaricenter.org/
You can Vote for a Cause at: http://apps.facebook.com/voteforacause/
and You can learn more about Chiari Malformations at: http://www.uscneurosurgery.com/Disorders_includes/arnchiari.html
I voted for the Chiari Foundation. :)