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.
May is syringomyelia and Ehlers-Danlos Syndrome (EDS) Awareness Month, and for our community, it’s so much more than a date on the calendar. It’s a chance to share our stories, honor the daily challenges and quiet strength of those living with syringomyelia and/or EDS, and remind one another that none of us are alone on this journey.
Too often, these conditions are misunderstood or invisible—but by speaking up and standing together, we shine a light on what it truly means to live with this condition. This month, we come together not only to spread awareness, but also to celebrate resilience, support one another, and hold onto hope for better answers and brighter days ahead.
DATE:
Tuesday, May 19, 2026
TIME:
5:30pm Registration
5:45pm Peer to peer support and refreshments
6:00pm Lecture
EXPERT SPEAKERS AND TOPICS:
Meghan Candee, MD, MSc – “Headaches in Children and Teens: A Practical Guide for Parents”
Vijay Ravindra, MD – Topic TBA
Kathryn Johnson, PT, DPT – Topic TBA
Kelsi Schiltz, PT, DPT, NCS – Topic TBA
LOCATION: Intermountain Primary Children’s and University of Utah, 81 N. Mario Capecchi Drive, Eccles Outpatient Building, The Lone Peak room, Salt Lake City, UT 84113
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INTRO TO “CRAFTING HEALING NARRATIVES COURSE: TELLING YOUR PATIENT STORY” WITH Q&A – with Christie CoxDATE: Thursday, May 21, 2026
TIME: 7:00pm ET
EXPERT SPEAKER: Christie Cox, Patient advocate and best-selling author
REGISTER HERE FOR VIRTUAL ATTENDANCE
On this call, Christie Cox will be launching and discussing her 6-module video course, designed in six accessible, approximately 30-minute sessions. It is a guided experience to help you explore, shape, and reclaim your story through therapeutic writing.
This course was built from lived experience and a deep understanding of what it means to navigate complex, often misunderstood conditions like Ehlers-Danlos syndrome, Chiari malformation and syringomyelia.
Together, Bobby Jones CSF and Christie are offering this course as a gift to the patient community—because your voice deserves space, structure, and support.
Are you looking for support but maybe aren’t ready for a face-to-face group meeting yet? Maybe the timing of the meetings aren’t good for you? You can join our online support group on Inspire.com – Chiari & Syringomyelia Unite.
We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET and for ADULTS & CAREGIVERS every last Tuesday of the month at 7:00pm ET. This month’s meetings are…
High School/College Support Meeting – Sunday, May 24, 2026 @ 5pm ET
Adult/Caregiver Support Meeting – Tuesday, May 26, 2026 @ 7pm ET
Patient Empowerment Interest Group. Your journey is more than a diagnosis… it’s the missing piece to better care. 🧩 We’re actively looking for members for our Patient Empowerment Interest Group to help us.
🎯 Guide us on which research projects get funded.
🛠️ Create practical tools for daily symptom management.
🗣️ Ensure care remains rooted in the actual patient experience.Low pressure, high impact. You choose your level of involvement based on your energy and schedule. 👉 Apply to join the group here: https://forms.gle/Le7KupMiiJraACJx6
Preview: 2026 Think Tank Meeting. Our annual Think Tank returns this April! Beyond our strategic research planning sessions, we are thrilled to host groundbreaking presentations from leaders in the field. Here is a sneak peek at what’s on the agenda:
We are committed to bringing the brightest minds together to turn these insights into better care for patients living with Chiari, syringomyelia and related disorders.
CHAIRPERSON REGISTRATION
Join the unite4answers team by registering to be a 2026 Chairperson. We will work with you to set up your group event or solo walk. Register here.
Be part of the amazing team that has raised almost $2.9 million to help fund programs and research. Our driving force for research is improving the lives of families affected by Chiari, syringomyelia and related disorders. We are collaborating and supporting projects spanning many topics, both internal and external to the organization. Read more!
NATIONAL SPONSORSHIPS
More information about national sponsorships here.
If you would like to be a unite4answers national sponsor, you may register online and pay here. The deadline to be included on the national t-shirt has passed but we welcome your support as a sponsor!
If you would prefer to send in a check, complete this form and mail to:
Bobby Jones CSF, 69-39 Yellowstone Blvd. #216, Forest Hills, NY 11375.
Bobby Jones CSF is committed to helping the over 3.5 million people in the United States, and my more worldwide, who are living with Chiari malformation, syringomyelia, and related disorders. Our fundraising supports the organization’s critical research initiatives and provides comprehensive support services and educational programs to everyone affected by these disorders. Join us at an event near you!
TOPGOLF ACROSS AMERICA
Join us for unlimited game play for three hours, all you can eat buffet, and a chance to win prizes. Click below for more details and to register. KEEP AN EYE OUT FOR A LOCATION NEAR YOU!!
Sunday, May 17 – Holtsville, New York
SATURDAY, AUGUST 8
Inside the Lab: A Chiari Community Open House
Presented by Bobby Jones CSF in collaboration with Northeastern University’s Chiari NeuroBiomechanics Research Lab
Northeastern University
Boston. Massachusetts
REGISTER HERE
SATURDAY, OCTOBER 17
Dinner Dance for a Cure
Hilton Garden Inn
Twinsburg, Ohio
REGISTRATION COMING SOON
TUESDAY, OCTOBER 20
“Play it as it Lies” Open for Bobby Jones CSF
Bethpage State Park
Farmingdale, New York
REGISTER HERE
SATURDAY, OCTOBER 31
International Night of Light Gala
The Metropolitan Club
Washington, DC
REGISTRATION COMING SOON
