APRIL 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. John Heiss will be speaking on the topic of  Chiari I Malformation Diagnosis and Treatment Update” on Thursday, Thursday, April 14th at 7:30pm ET. Dr. Heiss is Head, Clinical Unit, in the Surgical Neurology Branch, NINDS, at the National Institutes of Health in Bethesda, Maryland and Clinical Professor of Neurosurgery, George Washington University, Washington, DC. REGISTER HERE.

We will be holding an in-person lecture at MUSC in Charleston, SC on Monday, April 25th. Dr. Josef Eichinger will be speaking on the topic of “Shoulder Instability in the Patient with Ehlers Danlos.” Patient to patient discussion group will be at 5pm and the lecture will be at 6:30pm. 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!

4/12 @6:30pm – Children Support Meeting

4/12 @7:00pm – Parent Support Meeting

4/24 @5:00pm – High School/College Support Meeting

4/26 @7:00pm – Adult Support Meeting


Chiari Surgical Success Scale
The CSSS study had its official kick-off call last month and recruitment is going strong, so far! You can learn more about the studies on our website.
International Patient Registry

We’re getting ready to add two new surveys to the International Patient Registry. In the meantime, make sure you’ve responded to the two surveys already in the system about the 5mm rule and telehealth preferences for patients with Chiari, syringomyelia and related disorders. Get started here.

You are also able to connect your patient portal and even upload genetics results, if you have them! Got questions? Contact Kaitlyn at any time.

2022 Think Tank Meeting

This year’s Think Tank meeting will take place as a half-day seminar for experts to share their research and theories on Chiari malformation, syringomyelia and related disorders. This exchange of information is so important to finding answers for the many people who are suffering with these conditions. Here are just a few of the presentations and discussions that will be included:

Longitudinal scoliosis behavior in Chiari malformation with and without syringomyelia
Dr. Silky Chotai, Vanderbilt University (Nashville, TN)

Posterior cranial fossa and cervical spine morphometric abnormalities in symptomatic Chiari type 0 and Chiari type 1 malformation patients with and without syringomyelia
Dr. Enver Bogdanov, Kazan State Medical University (Tatarstan, Russia) and Dr. John Heiss, National Institutes of Health (Bethesda, MD)

Occipital-Cervical Fusion and Ventral Decompression in the Surgical Management of Chiari-1 Malformation and Syringomyelia: Analysis of Data From the Park-Reeves Syringomyelia Research Consortium
Dr. Alexander Yahanda, Washington University School of Medicine (St. Louis, MO)

Functional and morphological changes in hypoplasic posterior fossa
Dr. Luca Massimi, Università Cattolica del Sacro Cuore (Rome, Italy)

Systematic review and meta-analysis of imaging characteristics in Chiari I malformation: does anything really matter?
Dr. Travis Atchley, University of Alabama Birmingham (Birmingham, AL)

Socioeconomic and demographic factors in the diagnosis and treatment of Chiari malformation type I and syringomyelia
Dr. Syed Hassan Abbas Akbari, Penn State University (State College, PA)


2022 Bobby Jones Classic at East Lake Recap
Thank you to our Bobby Jones partners, sponsors, and everyone who contributed to the 2022 Bobby Jones Classic! Check out some highlights from this past weekend. Special thank you to Jason Gore and our partners at the USGA, Tyler Guettler, Brian Katrek & John Maginnes, Connor T. Lewis, Vince Carter, and Matt Doherty for helping make this Classic the best one yet! Looking forward to the next Classic. View the Bobby Jones Classic Media Gallery, with photos from this year’s tournament, here.

Subscribe on to stay in the know… big things are coming!

The 6th CSF Hydrodynamics Symposium will take place in Gainesville, Florida on June 16th and 17th. Keynote speakers include Dr. Maria Lehtinen, Ph.D. from Harvard University and Dr. Petra Klinge, MD, PhD from the Warren Alpert Medical School of Brown University. More information on the Symposium website.

“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 Ellenbogen and Professor Concezio di Rocco in Paris, France on Friday, November 18th with a pre-Gala event on November 17th.


We are so excited that there are 31 walks on the books. Thank you so much to everyone who has registered to host a walk. It’s not too late – you can still register to host a walk – big or small. 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.

A huge shout out and thank you to the 2022 National unite@night Sponsors.  We appreciate you so much!!!  T-shirts are going to print this week.



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.

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