Welcome to our News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!


This month, our Ask the Expert lecture will feature Mr. Wayne Wildrick, Edward Jones Financial Advisor,  on Thursday, August 25 at 7:30pm ET. Mr. Wildrick will be speaking on the topic of Donor Advised Fund. Register here.

Have a topic of interest? Contact:


We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET, for ADULTS every last Tuesday of the month at 7:00pm ET, and for PARENTS and CHILDREN quarterly, on the second Tuesday of the month.*

The Children’s support meetings will take place just prior to the Parent’s meetings, at 6:30pm ET. A parent or caregiver must be present with the child at the children’s meetings. Registration is part of the Parent’s registration (there is an extra question to answer regarding whether you will be attending the child’s meeting at 6:30pm)

*UPDATE: We will be hosting the Parent and Child Support Meetings quarterly. Our next meeting will after this one will take place the second Tuesday in November. Keep an eye out for that registration link in the coming months.

Parent/Children Support Meeting – Tuesday, August 9 @6:30pm/7:00pm

Adult Support Meeting – Tuesday, August 23rd @7pm

High School/College Support Meeting – Sunday, August 28th @5pm


We have officially re-launched our long-term study of patients and families affected by Chiari malformation, syringomyelia and related disorders. As part of that study, we are running a time-bound project with a goal of developing a tool for companies seeking FDA approval for new treatments and devices that will be accepted by the FDA.

We plan to use a new methodology and determine if we can better include the patient and caregiver voice in the development of new treatments and devices! We will send back most of these results immediately to everyone involved in the study. No more waiting years and years to see the results of a study– if you ever see them at all.

The 1st questionnaire for this patient voice project will close in 2 weeks, so be sure to get started now! Tell us all the symptoms associated with your disorders as well as the treatments you’ve undergone. You can save and come back to the project if you need a little time to think.

Have a question about this and the other research we are conducting now? Contact Kaitlyn at


Mount Pleasant Open
Friday August 12 – Sunday, August 14, 2022
Mt. Pleasant, South Carolina

Join us from August 12-14 at Patriots Point Links in Mt. Pleasant, South Carolina for the 10th Annual Mount Pleasant Charity Open to benefit Bobby Jones CSF. A weekend full of safe outdoor recreation, food, friends, and fun. Tournament is open to any skill level – professionals, amateurs, Patriots Point Pass holders, and the public! Registration and sponsorship opportunities here.

Cabs for Chiari
Saturday, August 20, 2022
Woodinville, Washington
Join us for Cabs for Chiari at DeLille Cellars in Woodinville, Washington on August 20 from 7-10pm PT. Enjoy cocktails, heavy appetizers & desserts, bluegrass band, and silent auction including artwork, photography, football tickets and wine/food packages, all to benefit the Bobby Jones Chiari & Syringomyelia Foundation. If you are interested in attending or donating, you may do so here.

TopGolf for Bobby Jones CSF
Sunday, September 25, 2022
Holtsville, New York
Join us on September 25th at TopGolf in Holtsville, Long Island, New York. Unlimited game play, open bar, food, a chance to win $10,000 and more! $100 registration fee (register as a team (6 per group) or as an individual. Sponsored by Dr. Catherine Loughin and proceeds will benefit Bobby Jones CSF. Register here.

“Oktoberfest” Dinner Dance for a Cure
Saturday, October 22, 2022
Twinsburg, Ohio

SAVE THE DATE for the 2022 Dinner Dance for a Cure on October 22 – Tickets and sponsorships available soon!

International Night of Light Gala
Thursday, November 17 – Friday, November, 18, 2022
Paris, France

We will be honoring Dr. Richard G. Ellenbogen and Professor Concezio Di Rocco at the Cercle de l’Union Interallie, in Paris, France on Friday, November 18th with a pre-Gala event on November 17th. Purchase tickets, a research sponsorship, or be an event underwriter.

Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
Atlanta, Georgia
OUR NEW 2023 BOBBY JONES CLASSIC WEBSITE IS NOW LIVE. Secure your playing spots or sponsorships now!


The 2022 unite@night walks are under way! Thank you so much to everyone who has registered to host or participate in a unite@night event. We will be very busy throughout the Fall with all the unite@night events coming up.

A huge shout out and thank you to the 2022 national unite@night sponsors. We appreciate you so much!!

If there aren’t any walks in your area, you can still be part of the fun by registering for a solo walk. Just register here. Fundraise at your convenience and you can earn a t-shirt and other recognition prizes, depending on how much you raise. The funds raised from the unite@night walks help fund research, programs that educate, and online support groups.

T-shirts are in and they look great. Can’t wait to start sending out the “walk in a box” to all of our upcoming Walk Chairs so everyone can start wearing there comfy t-shirt.

Please contact Cathy Poznik at (330) 573-5560 to find out how easy it is to help make a difference!!

Shop Amazon and Support Bobby Jones CSF!

Thanks to you for shopping at or with AmazonSmile turned on in your Amazon shopping app! Your everyday purchases have generated over $10,000 in donations to Bobby Jones CSF!!

Shop right now through the link below and AmazonSmile will donate a portion of your proceeds back to Bobby Jones CSF at no additional cost! You can do good just by purchasing items you already need!


If you remember to go to AmazonSmile first, every time you shop, that’s awesome! For most people, the best thing to do is add a browser extension that automatically redirects you.

For Google Chrome, check out Smile Always.

For Firefox, check out Smile Redirect.

For Safari, check out KeepOnSmiling. These extensions will automatically redirect you to your page every time, so you will never need to remember to go to first!