Because Chiari malformation, syringomyelia and related disorders are so poorly understood by the public and medical professionals alike, awareness is one of CSF's top priorities. You can choose to watch and share some of our CSF awareness stories, or you can watch and share awareness videos made by people just like you-- patients, caregivers and dedicated volunteers who want to get the message out to as many people as possible!
Many of the awareness videos by CSF were professionally directed and produced by Emmy-award winning film makers, Bob Bagley and Sterling Johnson. These fine videos were made possible by a very generous grant from the Jordan Family Foundation. Stories just like the ones in these videos are used to introduce educational lectures at our regional Educational and Awareness Events around the country.
Rosanne Cash at the 2015 CSF Night of Light Gala
"Looking back, it was shocking how many of those practitioners, in essense, blamed me for the pain and the limitations... I still have issues. But people live with a lot worse." GRAMMY award winning singer/songwriter, Rosanne Cash, describes her struggle to get a diagnosis, find the right surgeon, and try to get back to a "normal" life with Chiari and syringomyelia. Even though she still experiences symptoms, her incessant fight to remain positive and find humor inspires hope for so many patients and families.
NBC TOUR Championship Spot for the Bobby Jones Classic
NBC Sports and the TOUR Championship by Coca-Cola helped bring about more awareness for Chiari malformation, syringomyelia and related disorders on Saturday, September 13, 2014 when Emmy-award winning sportscaster Jimmy Roberts interviewed CSF Chairman Paul Farrell (pictured left, with Dorothy Poppe, CSF Executive Director), and Bobby Jones historian, Dr. Linton Hopkins at East Lake Golf Club. Discussion involved syringomyelia, which brought Bobby Jones' legendary golf career to a swift halt. The spot highlighted the fact that syringomyelia, Chiari and their related disorders affect over a million people in the US, alone; more than ALS (Lou Gehrig's disease). But while ALS had its "ice bucket challenge," similar awareness for Chiari and syringomyelia has yet to be sparked. *Press Release
Skyler Day is a beautiful young girl who has had Chiari decompression surgery for Chiari malformation and syringomyelia. Hear her explain what these disorders are, and why organizations like CSF help provide hope.
Our awesome CSF walk chair, Amy I., put together this great video sharing the highlights of her unite@night walk that took place in Akron, Ohio to raise awareness, support and important funding for research and education.
This is a video made by the Team Lydia's Light to bring awareness to Chiari malformation and their local 2015 unite@night walk. You'll hear Lydia's amazing story and learn how her friends, Angelina and Zachary, helped raise a lot of money in support of her struggle!
"My daughter, Amy was diagnosed in February with Chiari and Syringomyelia. She is an incredibly brave kid! Her strength and smile are contagious. September is Chiari Awareness month. Keep all those who struggle with this in your prayers. Thank you." - Rhonda