As you may know, Bobby Jones is considered by many to be the best golfer in the history of the game and who, in 1930, was the first (and remains the only) person to have won golf’s Grand Slam (all four major championships in the same year). Equally important, though, as his golfing prowess, he was known and admired as a true gentleman… dependable, trustworthy and loyal.
We invite you to become a member of the “Bobby Jones Loyalty Club” – a supporter we can depend on, who helps us in our mission, throughout the year, with regular monthly donations. As a member of this club, you will be playing a crucial role in furthering our research, education, and advocacy efforts this year and beyond.
Will you become a member of the Bobby Jones Loyalty Club with a monthly recurring donation?
As a special thanks for your generous commitment, if you join with a monthly contribution of $19.30 or more, we will send you a special gift.
When you join the Bobby Jones Loyalty Club, you can rest assured that your donations will be used responsibly…we are proud that Bobby Jones CSF is currently the only organization serving patients with Chiari, syringomyelia and related disorders to have earned all three of the following distinctions: BBB Wise Giving Alliance Seal, GuideStar Platinum Seal and the Health on the Net Code.
Your monthly contribution will help us by not only sustaining our efforts, but strengthening and growing them…
Our research network is in full swing with the establishment of the Chiari Clinical Research Network (CCRN). This collaborative group of nationally recognized neurosurgeons is working on global participation in surgical trials research.
Our CSF Patient Registry has expanded to include electronic health records. The Chiari Postural Orthostatic Tachycardia Syndrome Study is recruiting patients and will be the first study completed through this registry
Late last year, we submitted our new Common Data Elements to the National Institutes of Health for public review. This will expand the current dictionary for standardization of terms, definitions and measurements to help researchers speak the same language.
We are continuing our weekly virtual “Ask the Expert” series which has helped patients and researchers get answers to questions, in real time, during the pandemic isolation. We have also increased our virtual support groups, for adult patients, parents and young adults, to three times per month. This emotional and mental support has helped so many families get through this very trying time.
We have funded $6 million dollars worth of education and research projects/meetings in our first 12 years and have impacted more than 3.5 million people around the world who are looking for answers. With your help, we can continue to move forward in our efforts and have our most impactful year so far.
On behalf of all of us at the Bobby Jones Chiari & Syringomyelia Foundation, thank you for being a part of our community. With the same focus, determination and integrity as the great Bobby Jones, and with your help, we will rise to the challenge to conquer Chiari, syringomyelia and related disorders.