JULY 2022

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 Dr. Bob Jones IV, Psy.D. On Thursday, July 21 at 7:30pm ET, Dr. Jones, a licensed psychologist at the Behavioral Institute of Atlanta, Georgia, will be speaking on a topic TBA. 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 take place the second Tuesday in August. Keep an eye out for that registration link in the coming months.

High School/College Support Meeting – Sunday, July 24th @5pm

Adult Support Meeting – Tuesday, July 26th @7pm


This month, Bobby Jones CSF will be presenting some planned research projects at the Genetic Alliance Research Symposium on Thursday, July 7th. Representatives will also attend the 2022 NINDS Nonprofit Forum to network with like-minded organizations and learn about the cutting-edge practices in patient advocacy and patient-centered research.

The Chiari Surgical Success Scale study is also well-underway and is now enrolling participants! You can learn more about this study on our website. We’re also excited to announce that additional sites are currently being considered for addition to make this study even larger and more impactful.


Cabs for Chiari Event
Dr. Tygh Wyckoff, Bobby Jones CSF Board of Trustees, and Dr. Sarah Menashe are hosting Cabs for Chiari at DeLille Cellars in Woodinville, Washington on August 20th from 7-10pm PT. Join us for 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
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
SAVE THE DATE October 22 – Tickets and sponsorships available soon!

International Night of Light Gala
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.


Thank you so much to everyone who has registered to host or participate in a unite@night event. Although you can still register to host a larger walk, it’s very easy to set up a solo walk to help make a difference. 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. Sign up here if you are interested in still hosting a larger walk.

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