Board of Directors Director



Director, Secretary

Pam Fenner lives in Glen Allen, VA with her husband, Steve and two children, Roman and Eden. Both of her children have Ehlers Danlos Syndrome. In addition, Roman has Intracranial Hypertension and Eden has Chiari Malformation. Not only does Pam understand the plight of these conditions because of her children, she too suffers from EDS, Chiari, and Intracranial Hypertension and can personally relate as well. While Pam was not affected by these conditions until midlife, her son Roman has been affected since his early teens and her daughter Eden has been affected since she was a toddler. Roman strives to become a doctor, to one day help patients affected by Chiari, Syringomyelia and related disorders.

Pam received her B.S. in Mass Communications from Virginia Commonwealth University in Richmond, Virginia in 1993. She has been passionately volunteering over the past several years, determined to change the world for all of those living with these conditions. Pam has helped to establish and lead support groups for CSF, along with chairing the annual Richmond, VA unite@night walk. She also served on the board of TCAPP (The Coalition Against Pediatric Pain), heading up their Outreach Community. Through her work with TCAPP, she helped to create a free summer camp for kids living with chronic pain and developed a support system network throughout the United States, connecting families with these conditions. She helps families like hers daily to receive the necessary answers and care that they desperately need. Pam knows firsthand how difficult and overwhelming it can be navigating through medical issues and actively shares her story in hopes of benefiting others.

Although a native New Yorker, she fell in love with Richmond while attending college and has lived outside of the city ever since. She enjoys spending time with her family and friends and singing karaoke with her four sisters. You might be surprised to know that Pam is the first documented EDS patient in the world to receive a cerebral stent for Venous Sinus Stenting related to Intracranial Hypertension.

Pam is dedicated to helping create a future where patients receive a quicker, proper diagnosis, along with optimal treatments, while searching for a cure. She is honored to be a part of the Bobby Jones CSF family, serving on the Board of Directors.

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