The 12 national CSF Regions in the United States are composed of one or more local Chapters. Each Chapter seeks to educate the medical, allied sciences, and lay community about these disorders, increase awareness, raise important funds for programs and research, and provide support. Click here to view a map of the 12 national regions.
how you can help
Thinking about taking a more active role in changing the world for the over one million families in the US, alone, who are affected by Chiari malformation, syringomyelia and related disorders? Join the movement and make a #CSFresolution for the New Year to make sure that no one has to go through this alone in 2015 by becoming a CSF Chapter Representative in your local area!
What does becoming a CSF Chapter Representative mean? Well, it means whatever you think it means! The only thing we ask of each Representative is to spread awareness, education, and emotional support to local individuals living with Chiari, syringomyelia or a related disorder.
What are my duties as a CSF Chapter Representative? The only task that is required of a CSF Chapter Rep is to take local calls/emails and pass on that information to CSF's national offices. ... No, really... that's it. From there on out, all you want to do will depend on how much time and physical ability you have to make a change!
What if I want to do more than just provide support? Want to do more to change the world for those affected by these disorders? Not to worry... there is so much more that you can do as a CSF Chapter Representative! Check out all the other extra stuff you can get started in your local community:
Educate local doctors, educators and other leaders in the community: CSF national offices will work with you to help set up local educational lectures, or even build upon the Consider Chiari campaign, aimed specifically at educating and spreading awareness to medical professionals and leaders in the community. The first step in making a change, it recognizing the change is necessary... and we want to help make sure that knowledge about these conditions is freely available.
Engage in advocacy efforts with US Congress. You will have the opportunity to work with CSF and participate in the annual unite@thehill by either visiting Washington, DC and scheduling appointments with Senators and Congresspersons, or by collecting/sending large amounts of letters and emails using CSF's advocacy tools to help improve the lives of American families affected by these disorders. By participating in advocacy you can help ensure widespread change, by amplifying the message. for patients with CM, SM and related disorders.
Become a leader in the community for support and hope. There are an unknown number of individuals in your local area who have no idea where to turn, can't seem to get a diagnosis, or maybe who are simply having a hard time coping with their symptoms, finances, etc. By simply being a friend, you literally have the power to improve someone's life. CSF Chapter Reps help organize support group meetings and are generally available as a hand to hold. And by offering your support, you can almost guarantee that you'll make new, lifelong friends who will support you, whenever life may be getting rough for you, too!
Help raise desperately needed research and education funding. The unfortunate truth that people living with Chiari, syringomyelia and related disorders have had to face in the past is that these conditions are considered, though mistakenly, to be quite rare... and therefore, funds for groundbreaking research and desperately needed educational programs are very hard to come by. As a CSF Chapter Rep, you an help organize local fundraisers-- on both large and small scales. You can set up a small fundraiser, or even participate in the annual unite@night walks! Either way, any amount of donations help. After all, a $25,000 research grant begins with the donation of a single dollar!
...and maybe even more! Think of something not listed here that you want to try out? Tell us!! We're always excited to learn about new, innovative ways to spread education and awareness and raise important funds.
You can start a CSF Chapter in your own local area! Contact Cathy Poznik at cpoznik@CSFinfo.org or by phone at (330) 998-6195 to learn more about how to get started!