What is the Bobby Jones CSF?
The Chiari & Syringomyelia Foundation is a non-profit organization founded in 2007, changing its name in 2019 to become the Bobby Jones Chiari & Syringomyelia Foundation, or Bobby Jones CSF. Our goal is to raise awareness and find a cure for Chiari malformation, syringomyelia, and related disorders.
We have funded over $6,000,000 in education, research projects, and meetings that have impacted the 3.5 million people worldwide looking for answers and cures for these disorders.
Bobby Jones CSF Network of Experts
Our Scientific Education and Advisory Board comprise many internationally renowned medical doctors, professors, scientists, and experts. The Board of Directors and Board of Trustees include community and business leaders, educators, legal experts, families, and patients who have long been advocates in the CSF community. Their skills and drive to develop, fund, and oversee Bobby Jones CSF programs and research will improve the lives of the over three million families affected by Chiari malformation, syringomyelia, and related disorders in the United States.
Recognitions and Awards
Bobby Jones CSF is currently the only organization funding research, education, awareness, and advocacy for Chiari malformation, syringomyelia, and related disorders to have all three of the following accreditations: 1) Better Business Bureau’s Wise Giving Alliance seal 2) Guidestar Platinum Seal, 3) Health-on-the-Net (HON) Code certification for accurate scientific and medical information. We are rated a 2022 Top Nonprofit independently by donors, patients, families, and GreatNonProfits. Each year, you can find Bobby Jones CSF in USA Today’s Giving Tuesday edition, along with other nonprofits deemed effective in their missions and responsible with their donors’ dollars.
As a leader in the nonprofit world, Bobby Jones CSF was the first nonprofit organization asked by the Congress of Neurological Surgeons to sit on a Guidelines Committee for neurosurgical clinical care, having a voice in the treatment plans for patients around the country. We are the first nonprofit organization to independently produce and publish Common Data Elements (CDEs), standardizing research terminology and measurements for these disorders. These CDEs were later adopted by the National Institutes of Health, the National Institutes of Neurological Disorders and Stroke, and the National Library of Medicine. Bobby Jones CSF is also a founding member of the Chiari Clinical Research Consortium, the first international and multi-institutional coalition of its kind, with a shared goal of developing ongoing clinical trials and research studies. These projects will yield the highest-quality medical evidence for better diagnosis, treatment, and outcomes for patients around the globe. Despite academic interest in the past, scientific evidence of this caliber had never previously existed for Chiari and syringomyelia.
Bobby Jones CSF brochure to download and print here.