Chiari walk

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Chiari walk

Postby June » Tue Jun 05, 2012 12:14 am

Just been reading about the Chiari walk in Sept. Apparently last year's effort brought in more than $400,000, nationwide. Why is there nothing similar for syringomyelia?

I don't have CM--only SM, and I'm feeling a bit miffed about this. I'm glad the Chiari people have been able to get their act together, but I guess we SM-ers need to do something, too. Apparently, when it comes to money, it is every disease for itself!
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Re: Chiari walk

Postby DEN » Tue Jun 05, 2012 1:44 am

Considering ~85% of SM is due to CM, then it makes sense that most of the people you encounter will be CM and thus have greater financial support. One of the advantages is that SM is now on the map due to the CM, and treatments/developments are in pursuit because of CM.

While I agree that SM needs greater awareness and financial support, the stuff received is largely due to CM campaign. So I feel it would be better to work alongside for the greater cause.

I support both, both have ties to the SM side.
Supporter of a loved one with SM.
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Re: Chiari walk

Postby pmaxwell » Tue Jun 05, 2012 11:38 am

June wrote:Just been reading about the Chiari walk in Sept. Apparently last year's effort brought in more than $400,000, nationwide. Why is there nothing similar for syringomyelia?

I don't have CM--only SM, and I'm feeling a bit miffed about this. I'm glad the Chiari people have been able to get their act together, but I guess we SM-ers need to do something, too. Apparently, when it comes to money, it is every disease for itself!


ASAP has walks to bring awareness to both Chiari and Syringomyelia. The problems is we need volunteers willing to organize and sponsor the walks. Our President, Patrice Schaublin works with anyone willing to set up walks. You can contact her at Patrice_Schaublin@ASAP.org. She would love to hear from you.

Patricia
Together We Can...
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Re: Chiari walk

Postby June » Wed Jun 06, 2012 12:16 am

Patricia -- I'm glad to learn that there are walks for SM as well. Thank you for your reply. And there was a time in my younger, healthier days when I would have enjoyed helping to set up fundraisers for our group--did, in fact, work with local political organizations and the rape crisis team for many years. But my ability to do those sorts of things is long past. All I can do now is donate a bit of money, and of course, it is never enough.

My husband participated in his Parkinson's walk last week. A friend will bike for diabetes soon. We have fundraisers for breast cancer, lung cancer, heart disease. But do you ever hear about syringomyelia? I certainly don't. Not that I wish this dreaded malady on anyone, but I do wish some famous person would take us under their wing--as Michael J. Fox has for Parkinson's disease--and bring us forward into the limelight. I think it would do us a world of good.

Sorry to be such a grouch. I bear no animus towards anyone, certainly not the Chiarians. Pain has been more present in my life lately than usual. Sometimes it overwhelms me, and I lose my bearings. I'll get back on track, but I would like to see more done for people with SM and wish I could help.

June
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