PATIENT STORIES

Because Chiari malformation, syringomyelia and related disorders are so poorly understood by the public and medical professionals alike, awareness is one of Bobby Jones CSF’s top priorities.

You can choose to watch and share some of these 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!

Bobby Jones CSF Stories

video-poster play-icon I’ve Just Been Diagnosed… Now What?: A Patient’s Perspective
video-poster play-icon Patient Testimonial – Cassy Langa
video-poster play-icon 2015 Children’s Night of Light Gala Patient Speaker: Rosanne Cash
video-poster play-icon NBC TOUR Championship Spot for the Bobby Jones Classic
video-poster play-icon A New Life for Zoe
video-poster play-icon Bridging the Divide
video-poster play-icon …Could you spell that for me?
video-poster play-icon Kaya’s Story
video-poster play-icon Now What…?

Volunteer Stories

video-poster play-icon UNITE@NIGHT AKRON, OHIO MEMBER WALK
video-poster play-icon CHIARI MALFORMATION: ADVOCACY IN ACTION
video-poster play-icon CSF UNITE@THEHILL – LITTLE ADVOCATES
video-poster play-icon SKYLER’S PSA
Some of the awareness videos by Bobby Jones 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. Click through to see which ones! Stories just like the ones in all these videos are used to introduce educational lectures at our regional Educational and Awareness Events around the country.  

Reviewed on 9/2019