JUNE 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!

Please consider supporting our 2023 Annual Fund to keep all of our important initiatives moving forward. Donate here.

We can’t do it without you!

Every dollar you donate is put to work exponentially. These pages highlight the work your donations have made possible in just one calendar year.


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.

Or join us for the solo walk (Register here)!

Did you know that if you collect $10 from 5 friends, you will earn the 2023 unite4answers t-shirt and a light-up item. Earn incentive prizes based on how much you raise.  See them here.


IN-PERSON: On Tuesday, June 27th, Dr. Jeffrey Greenfield, will be speaking at Weill Cornell Medicine. More details 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)

High School/College Support Meeting – Sunday, June 25th @5pm ET

Adult Support Meeting – Tuesday, June 27th @7pm ET


Chiari Surgical Success Scale Updates. There are 81 participants actively enrolled in the study so far, with 3 different sites enrolling. Data collection is complete for 9 of those participants already! Learn more about the goals of the CSSS study on our website.

Physical and Mental Well-Being Study. Have you signed up for the study measuring overall physical and mental health in multiple diseases? Participation from patients and caregivers living with Chiari and syringomyelia will be critical to future clinical trials, providing biomarkers and outcomes to be measured for future trials. This is the second study we’re launching as part of a clinical trials readiness project– preparing our population for advances in treatments down the line!

If you would like to participate in this study, find the survey in our registry here. If you have issues accessing the study, or questions about the project, contact Kaitlyn at

External Research Opportunities. Don’t forget about a few of the other studies that folks have let us know about! Surveys will be closing very soon!

  1. Study to Assess the Needs for Caregivers. Are you a caregiver of someone with chronic pain, fatigue, or other symptoms? Researchers at the University at Albany, SUNYare seeking volunteers for a research study to understand the experiences of caregivers for individuals with chronic symptoms. The goal of this study is to understand what factors should be considered when supporting caregivers.

If you are interested in participating, please visit the link to access the survey:

You may also contact the principal investigator, Darren Winograd, M.A., at if you have any questions.

  1. Study to Understand the Economic Impact of Ehlers-Danlos syndromes.Are you or is someone in your household impacted by any of the Ehlers-Danlos syndromes? There is a new study aiming to look at the potential economic impacts of the conditions. See more below.

What is this study about?

To better understand the economic impact of Ehlers-Danlos Syndromes, researchers at Penn State College of Medicine are conducting a survey. The aggregate results will be published and made available to guide health services organization and policy.

You should take this survey if: 

  • You or someone in your family has Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD)
  • You are 18 years or older
  • You have knowledge of your family’s finances

About the survey:

  • It is anonymous
  • We ask about approximateexpenses for 1 calendar year: 2022. It will be good to gather financial expenses related to EDS before you begin(such as medical bills, itemized tax return).
  • The estimated time to complete this questionnaire is 30 minutes. It doesn’t have to be finished in one sitting. You can save your responses and complete it later.
  • If more than one person in your family has EDS, please complete a separate questionnaire for each family member.

Link to the survey:

This study was approved by the Penn State College of Medicine’s Institutional Review Board. If you have questions, please contact: Jane R. Schubart PhD (Associate Professor, Penn State College of Medicine, Hershey, PA):


Cabs for Chiari
Saturday, September 16, 2023
DeLille Cellars
Woodinville, WA
Wine, food, music, silent auction
Purchase tickets

Fire Maker presents The Calamity Jane Charity Cup benefiting Bobby Jones CSF
Wednesday, October 11, 2023
Bobby Jones Golf Course
Atlanta, GA
Tournament, breakfast, lunch, Fire Maker beer, silent auction, awards, party
Individual registration
Foursome registration

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

International Night of Light Gala
Saturday, October 28, 2023
Morikami Museum
Delray Beach, Florida
Tickets and sponsorships coming soon

Support Bobby Jones CSF with online shopping

As you may know, Amazon Smile shut down in February. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we 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!