RAISING AWARENESS SINCE 2007

WHO ARE WE?

The Chiari & Syringomyelia Foundation is a non-profit organization founded in 2007,  ultimately licensing the name of Bobby Jones in 2019 to become the Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF). Our goal is to raise awareness and find a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders.

We have funded over $6 million dollars worth of education and research projects/meetings in its initial years and has impacted more than 3.5 million people around the world, who are looking for answers.

Bobby Jones CSF Network of Experts

Our Scientific Education & Advisory Board is made up of 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 CM/SM 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, alone.

Bobby Jones CSF brochure to download and print here.

Recognitions & 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/medical information. We are rated a 2022 Top Nonprofit independently by donors, patients and families, on GreatNonprofits to do so. Each year, you can catch Bobby Jones CSF in USA Today’s Giving Tuesday edition, among other nonprofits deemed as both effective in their missions and responsible with their donors’ dollars.

About Bobby Jones CSF

Our Intended Audience

At Bobby Jones CSF (Bobby Jones Chiari & Syringomyelia Foundation) our goal is to reach: patients, caregivers, family and friends of patients, educators, advocates, physicians, nurses, allied health professionals, other medical professionals and ot her individuals interested in learning more about these disorders and the implications for th ose affected. Our work is to support research and education of the medical, scientific and la y communities about Chiari malformation, syringomyelia and associated conditions.

About the Medical Information
on the Bobby Jones CSF website

The information published on Bobby Jones CSF’s website was written with the assistance of the founding members of the Scientific Educational & Advisory Board (SEAB). The medical or scientific specialties of all members of the SEAB is listed under “About Us > Scientific Educational & Advisory Board” on the CSF website.

All medical information that is actively published on our website is contributed by SEAB members, or taken directly from papers found in peer-reviewed scientific journals, citations for which can be found at the bottom of the webpage containing relevant medical information. Any medical information that is not supported by peer-review will be explicitly identified either as an outside source or as the opinion of a non-medical professional for those visiting the website. Thus far, this has not been an issue, as CSF seeks to provide only the most scientifically accurate information to educate its audience, while not inspiring fear in patients and their families.

The medical information on Bobby Jones CSF’s website is regularly reviewed. Upon presentation of new, novel, or revised medical information, it is reviewed by the current SEAB. The information on the website is reviewed on at least an annual basis at an annual meeting of the SEAB and other Bobby Jones CSF Boards.

SEA Board Editorial Process

  1. New medical information and/or medical information to-be-revised is presented to the SEAB either at an annual meeting, or electronically if information is pressing

  2. Full SEAB provides comments / questions / criticisms on information
  3. Full SEAB provides edits, where necessary
  4. Final version of medical information is compiled and presented to the full SEAB again (in-person, or electronically) for final review
  5. Full SEAB votes on whether to include/exclude information on website

additional statements by bobby jones csf

This website and the information provided within it is funded entirely by public contributions to Bobby
Jones CSF as part of its mission to provide educational and informational services for patients,
caregivers and medical professionals. Bobby Jones CSF (Bobby Jones Chiari & Syringomyelia
Foundation) has no disclosures/conflicts of interests to declare.

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