Mission: The Chiari & Syringomyelia Foundation, Inc. (CSF) was established in October 2007 by a group of passionate and dedicated people who are committed to aggressively pursuing a cure for Chiari malformations (CM) and syringomyelia (SM). Our Medical Research Board consists of leaders in neurosurgery, neurology, neuroradiology, genetics, veterinary medicine, and engineering. Our Vision: Within a generation, we will be the preeminent world-wide resource for professional and laypeople seeking accurate and current information about treatments for and best practices surrounding the management of CM and SM. With our unique resources, both financial and intellectual, we will be the leader in driving ongoing programs and research focused on earlier diagnosis and better outcomes for people suffering with these disorders.
Results: Here are just a few of the items we have accomplished and helped to fund since our inception in 2007:
- research projects involving CM, SM and related disorders
- educational lectures given by medical professionals
- several fundraising efforts including (not limited to): the annual Bobby Jones Golf Classic in Atlanta, GA, about 50 annual national unite@night walks, as well as fundraising dinners, dances, etc...
- annual Think Tank of thought leaders across nation
- recurring International Hydrodynamics Symposium
- a new campaign to educate medical professionals about CM, SM and related disorders: "Consider Chiari"
- funding for a golf cart to help children with full or partial paralysis stay physically active (alongside Georgia Tech)
- multiple annual research colloquia
And we have so many more ideas! If you would like to help, you can either donate directly or actively volunteer at events like those listed above by starting a CSF Chapter!
Target demographics: educate about and fund research on Chiari malformation, syringomyelia and related disorders.
Geographic areas served: United States
Programs: Do you want to volunteer? You can get started locally by setting up a CSF Chapter in your area! You will help to organize a unite@night walk, fundraise, organize educational lectures and programs, hold meetings and become an integral part of CSF's national/international team!
Email Cathy Poznik at firstname.lastname@example.org to get started!
CSF has been incredibly helpful to myself and my family as we faced my daughter's diagnosis of Chiari and Syringomyelia in early 2012. They have wonderful resources with all the information you could possibly ask for regarding both and much more! My daughter and I have both attended several of the free seminars which have been incredibly insightful and it helps my daughter to know she is far from alone! This was our first year participating by starting our own Charter in Clyde, Ohio and having our CSF Unite@night walk and it was overwhelming the community support and to find so many other people in our surrounding area effected with this. CSF and the volunteers go above and beyond to spread awareness, help out in any way possible. It is an amazing relief to already worried parents to have CSF , all their information, compassion and caring people who will do whatever they can to share any and all info they have. Thank God for CSF and all it's many volunteers!