Here are some of the amazing projects that supporters like you have already helped with:
Chiari, syringomyelia, EDS or a related disorder can make a person feel powerless. Help these patients and families get their power back and help us kick these disorders to the curb.
The "Kickin' Chiari" Kickball Tournament will bring together people to support those living with the devastating effects of these disorders by providing research, education and advocacy programs that help advance the science and awareness in the medical community and the public to help improve the lives of individuals affected by these disorders.
Consider Chiari. Even though over one million families in the US are affected by these disorders, many medical professionals either have never heard of them, or aren’t exactly sure how to treat their patients most effectively. Your unite@night support has helped educate hundreds of professionals. You have helped educate more than 250 professionals around the country.
Educational Lecture Series. Support for unite@night helps local CSF Chapters host educational lectures for patients, families and the general public, too! These lectures help people learn more about these conditions, what they can expect after diagnosis or treatment, and how to cope. The lectures are always filmed and made available online so people who live in one city have access to the same information as someone who lives in another. Even more importantly, they help Chiari, syringomyelia, EDS and related disorder patients and families meet in person to talk and offer support.
International Patient Database. Research is absolutely critical to helping doctors prepare better treatments for patients. Your donations to this event are helping providing the seed money for a huge international patient database that will help determine the best treatments for patients not just with Chiari, syringomyelia, and EDS, but also who suffer from related disorders like dysautonomia, psuedotumor and more.
Advocacy & unite@thehill. Donations help sponsor CSF’s annual walk to Capitol Hill, where patients and families are able to bring their personal voice to Congress and the policy makers who have the power to influence their access and quality of care.
HELP US REACH OUR GOAL OF "KICKIN' CHIARI" AND RELATED DISORDERS!