REGISTRATION IS CLOSED FOR THIS EVENT. PLEASE REGISTER RIGHT AT THE WALK AND THANK YOU SO MUCH FOR HELPING TO "UNLOCK" SOME ANSWERS FOR THOSE WITH CHIARI, SYRINGOMYELIA, EHLERS DANLOS SYNDROME AND RELATED DISORDERS
Chiari, syringomyelia, EDS or a related disorder can make a person feel powerless. But what if you-- just YOU-- could be the one thing that makes their lives better? YOU can be the hope for a better future!
unite@night is a collection of one-mile, casual evening walks around the country that bring together people who are living with the devastating effects of Chiari malformation, syringomyelia, EDS and related disorders.
Bring your own awareness colors or join us in going black & gold to represent all patients who struggle with disorders like Chiari, syringomyelia, EDS and others. You only need to walk as far and raise as much as you can. Every step, roll or crawl is a move in the right direction towards relief from pain for so many.
We hope that with help from walkers like you we will raise $1 million this year for educational, advocacy, awareness and research programs!
Here are some of the amazing projects that walkers like you have already helped support:
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. In the first half of 2016, alone, your support will help to educate over 200 medical professionals!
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 unite@night 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 to unite@night 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.