MAY 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!


Deadline to book hotel is May 13th!
Join us on June 5th and 6th for wellness sessions, to meet and form lasting friendships with fellow patients and 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. Register or book your hotel room.

More information here.


Dr. Victoria Felix, Associate Director at Cognitive Therapy for Women Psychological Services, a mental health practice specializing in women’s mental health, will be speaking on the topic of “Cognitive Behavioral Therapy for Chronic Pain Management” on Thursday, May 12. 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.

5/22 @5:00pm – High School/College Support Meeting

5/24 @7:00pm – Adult Support Meeting


Last month, we held our annual Bobby Jones CSF Think Tank meeting. The meeting was held both in-person in Philadelphia, PA and virtually and was attended by over 70 clinicians and researchers. Presentations were made by individuals from 11 different institutions, representing four countries on two continents. Some of the topics presented touched upon issues that matter most to patients, including resolution of symptoms, diagnostic criteria, and surgical outcomes of posterior fossa decompression and fusion surgeries. Excitingly, there was a large group of medical students, young researchers and trainees who participated to learn more about this particular subset of patients who they will one day encounter and treat in the future!

Additionally, the Chiari Surgical Success Scale had its first, larger meeting of principal investigators and coordinators immediately following the Think Tank meeting. From this, a plan was drafted to find new sites and bring additional data into the project. This work will continue largely through May, ahead of our June activities.


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.

SAVE THE DATE! Dr. Tygh Wyckoff, Bobby Jones CSF Board of Trustees, and Dr. Sarah Menashe are hosting Cabs for Chiari at DeLille Cellars in Woodinville, Washington. Join everyone for food, music and libations to benefit the Bobby Jones Chiari & Syringomyelia Foundation. E-vite coming soon!

“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 36 walks on the books, including Solo walks. 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.

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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