I just wanted to re-post some really important information about the prevalence of chiari, and the number of federally-funded research studies:
Number of people with the following conditions:
ALS (Lou Gehrig's Disease): 20,000 cases in US
Huntington's Disease: 30,000 cases in US
Multiple Sclerosis: 400,000 cases in US
Parkinson's: 500,000 cases in US
Chiari: ~400,000 cases in US (probably more as so many new people are diagnosed every year)
And the number of federally-funded studies for each condition:
ALS: 758
Huntington's: 975
MS: 1,702
Parkinson's: 3,585
Chiari: 10
Seriously. This information is available at:
http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm
And even if you leave the government out of it: think of how often you hear about these other conditions. Think about how much money is raised in fundraisers and walks across the country each year. I truly hope that chiari is on that path...the path to awareness. Because awareness truly does lead to more funding for better research and better treatment options. It also helps patients feel less alone when people understand what they're going through...when people take their condition seriously. If there were more chiari awareness, then gradually, doctors would be better educated in chiari treatment, and patients wouldn't have to travel cross-country or farther for adequate treatment. And the few doctors out there wouldn't be alone in their research and treatment. They wouldn't have the burden of treating all of the chiari patients out there...and fixing all of the botched surgeries performed by local "specialists".
However, I would also like to mention that Conquer Chiari's Walk Across America raised $120,000 for chiari research and awareness. This is a huge success. And it's amazing to know how much just my little group of family and friends was able to contribute to the total number. Personally, I was honored to have $525 donated in my name. But with my mom, my aunt, and my uncle walking as well, I'm sure our donations were substantial. I'm humbled by the amount of support I received.
We hope for the walk to become an annual event, and grow every year.
