The Chiari Group Fund

Dear Friends,

 I think the thing that still shocks me, is that doctors still do not have a good understanding of Chiari and how to treat the condition, especially the pain.

We need to focus on pain research for the lingering,  life-altering pain that  children, teens and young adults are left with following decompression surgeries. There are no good treatments – every pain medicine has major side effects including fatigue, memory loss and addiction.There are many homeopathic treatments; which are helpful but not a cure.

While Chiari is classified as a rare disease, it actually affects 1 in 1000 people. Interestingly, not all of those people are symptomatic – what makes some symptomatic and others not remains a mystery. What is known, is that when children are symptomatic, it is complicated, misdiagnosed, and life changing.

We need to fund research, so that doctors can begin to understand why so many people surgically treated for Chiari as children continue to suffer with residual debilitating daily pain. Research takes money! On November 12, 2017, we are sponsoring our 3rd annual 5K run/ 3K walk – Running for Research. We have created The Chiari Group, and are affiliated with ACT for Alexandria as our 5013c. For more information, please visit www.thechiarigroup.org 

I hope you will consider joining us for the run/ walk, but if you are unable, please visit our website and consider making a donation for Chiari research.

It is a slow process, but working together - we will make a difference!

Sincerely,

Cass Boehm
Running for Research, Chiari Board Member