MARCH 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!


Dr. Shelly Wang will be speaking on the topic of  The management of Chiari malformations in the pediatric population” on Thursday, March 10th at 7:30pm ET. Dr. Wang is a pediatric neurosurgeon at the Brain Institute and Division of Pediatric Neurosurgery at Nicklaus Children’s Hospital. REGISTER HERE.

Have a topic of interest? Contact:


Introducing a support meeting for children ages 6-9 with Chiari, syringomyelia and related disorders! We all know the benefits of connecting with someone who knows just what you’re going through, let’s show our kids that they aren’t alone in this fight. Parents, accompany your child or children to the 6:30pm meeting and then stay on with us for our usual 7:00pm parent meeting!

3/8 @6:30pm – Children Support Meeting

3/8 @7:00pm – Parent Support Meeting

3/20 @5:00pm – High School/College Support Meeting

3/29 @7:00pm – Adult Support Meeting


International Patient Registry.
We will be launching new, small-scale studies in the coming months. Make sure you’ve signed up and responded to at least one of the two available surveys in the registry right now: the 5mm rule study and the telehealth feasibility study. Some of the upcoming topics we’re interested in studying: chronic pain, fatigue, medications, alternative therapies, concepts of “success” in surgical intervention, and more.

Chiari Guidelines.
The initial guideline recommendations are being finalized this month and should be available soon. BJCSF is in the process of providing comments from the patient and family point-of-view. We have learned so much in this process– including the many areas in need of future research. There is still so much work left to do! Stay tuned for more about this project.


2022 Bobby Jones Classic at East Lake – March 27-28, 2022

Register, Sponsor and secure your hotel room HERE

“Oktoberfest” Dinner Dance for a Cure
SAVE THE DATE October 22 – Tickets and sponsorships available soon!


We are so excited that there are 27 walks on the books. Thank you so much to everyone who has registered to host a walk. Will you consider helping by hosting a walk either in person, virtually, or a solo walk?  Please contact Cathy Poznik at (330) 573-5560 to find out how easy it is to help make a difference!!

The funds raised from the unite@night walks help fund research, programs that educate, and the online support groups. SIGN UP HERE.

Last Month to Become a National Walk Sponsorship and have your logo on the back of the t-shirt!

The deadline to become a National Walk Sponsor and be included on the t-shirt is April 1st. Take a look at the sponsor levels and share it with anyone who you think might be interested. View the 2022 sponsorship tiers and sign up to be a sponsor!


We are planning our 2022 unite@thehill! Join us on June 5th and 6th for wellness sessions, to meet and form lasting friendships with fellow patients, and finally to meet with Representatives on Capitol Hill to make a difference for people living with Chiari malformation, syringomyelia, dysautonomia, Ehlers-Danlos syndrome, and many other related disorders. More information here.

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 almost $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 KeepOnSmilingThese extensions will automatically redirect you to your page every time, so you will never need to remember to go to first!