APRIL 2023

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!

You make it happen!

Every dollar you donate in support of the Bobby Jones Chiari & Syringomyelia Foundation is put to work exponentially. This page (front and back) highlights the work your donations have made possible in just one calendar year!

Youth and Young Adult Ambassador Program

Are you a high school or college student interested in different ways to get involved with Bobby Jones CSF? Check out our current youth/young adult ambassadors here. If you are interested in participating in fundraising, advocacy, and awareness programs with Bobby Jones CSF, let’s talk. Contact Cathy Poznik to discuss:


Bobby Jones CSF is heading to the hill.  There is still time to join us.  For the past few years, Bobby Jones CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening.

To keep the momentum moving forward, we must continue making our voices heard… Right now, we have the following states represented and would love to include more: Florida, Maryland, Missouri, New Jersey, New York, Ohio, Pennsylvania, Tennesee, Virginia, Rhode Island and South Carolina.

Register hereFor additional information, visit our unite@thehill page for more details.  Deadline for hotel reservations is extended to April 12, 2023. Book your hotel room here.


unite4answers is a collection of fundraising events around the country to help fund medical research and education programs that foster better answers. These events bring people together who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome and related disorders. You can read more about unite4answers here.

We invite you to join us as an Event Chairperson, participant, or solo walker. If you are interested in chairing a unite4answers event, please register here.

To become a 2023 National Sponsor for unite4answers and be included on the back of the t-shirt, please see the below information and send in the form or complete the sponsorship form online here.  The deadline to be included on the 2023 t-shirt has been extended to 4/4/2023.

Earn incentive prizes based on how much you raise.  See them here!


Consider Chiari at Boston Children’s Hospital. You are invited to join a Chiari & Headache Conference to be held at Boston Children’s Hospital on May 8, 2023! Pre-registration is required. If you would like to attend in-person, there is a fee ($25 per person). The $25 in-person and the (free) virtual attendance are the best options for families and patients who do not need continuing education credits.

Two of BJCSF’s medical board members will be presenting at this conference: Dr. Cormac Maher (Stanford University) and Dr. David Limbrick (Washington University at St. Louis). Thank you to Dr. Mark Proctor and the entire team at BCH for putting on this excellent program on Chiari and headache! Learn more.

This month, we will have two virtual Ask-the-Expert meetings. On Thursday, April 6th at 7:30pm ET,  Dr. Kristopher Kahle, Chief of Pediatric Neurosurgery, Massachusetts General Hospital, will have an open Q&A. Register here.

On Thursday, April 27th at 7:30pm ET, Dr. Edward Ahn, Pediatric Neurosurgeon, Mayo Clinic, will be speaking on the topic of Pediatric Chiari. 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)

High School/College Support Meeting – Sunday, April 16th @5pm ET

Adult Support Meeting – Tuesday, April 25th @7pm ET


2023 Think Tank Meeting. BJCSF will host its annual Think Tank meeting on Friday, April 21, 2023 in Los Angeles, California. This meeting brings together neurosurgeons, neurologists, other clinicians and researchers to discuss new research in the areas of Chiari malformation, syringomyelia and related disorders.

The meeting fosters meaningful discussion to improve the quality of care for patients and quality of life for families. Some of the presentations to be discussed this year include topics like real-time CSF flow imaging, Chiari malformation and epilepsy in children, subarachnoid stents to treat syringomyelia and more. Learn more about previous Think Tank meetings on our website.

Craniocervical Instability: Coming to Consensus. Craniocervical instability (CCI) is a controversial issue in the medical field. There are no objective criteria that have been well-established to accurately diagnose CCI every time. Instead, diagnosis is made based on a combination of medical images and symptoms. Each doctor that a patient sees probably has their own idea about what a CCI patient “looks like”. This means that doctors are often left confused by what is published in the medical literature and patients are left disappointed when answers aren’t readily available. BJCSF is sponsoring a Delphi process involving clinicians on either side of this controversy.

The goal is to develop an expert consensus on what can qualify as objective signs, versus important subjective clinical signs of CCI. This will lead to diagnoses of CCI occurring often and accurately. This work will also help improve the research landscape, leading to even more conclusive evidence and answers in the future! The first meeting of this group will take place immediately after the BJCSF Think Tank.

Chiari Surgical Success Scale – Investigator’s Meeting. After the BJCSF Think Tank, there will be a meeting of the principle investigators of the CSSS project. This project is well underway. Over 500 patients have been screened to participate at the four active, enrolling sites. Of the 95 eligible patients, 70 have already agreed to participate in the study! This is very exciting because the project is poised to be the biggest partnership and dataset in Chiari and syringomyelia history. The long-term research opportunity to demystify these disorders is almost endless!

Thank you to all the patients, families and research partners who are making this breakthrough happen in real-time! Learn more about the CSSS here.


Sunday, May 7-Monday, May 8
Washington, DC
Register here

Dinner Dance for a Cure “In Paris
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Twinsburg, Ohio
Registration coming soon

International Night of Light Gala
Saturday, October 21, 2023
Morikami Museum
Delray Beach, Florida
Tickets and sponsorships coming soon

Support Bobby Jones CSF with online shopping

As you may know, the Amazon Smile initiative will shut down by February 20th. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we have received over $11,000 from your everyday shopping!

We know you are passionate about Bobby Jones CSF and want to let you know that we are now partnering with the  ShopRaise app, which gives a portion back to us whenever you do your normal shopping online at over 1,000 stores like Macy’s, Home Depot, and Walmart. 

Please help us support and promote our program by doing these 3 simple things:

  • Click the link below to get the ShopRaise app
  • Use tools in the mobile app to share it with family and friends
  • Shop online to support and help us reach our fundraising goals

Click here to get started.  With your help, we can make a difference in the lives of the community we serve!