Welcome to our updated 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!


10/7 – Dr. Marcus Stoodley
Topic: What is the surgeon trying to achieve when treating Chiari and syringomyelia?

10/28 – Dr. Ilene Ruhoy
Topic: A Focus on The “Pentad” Patient

On October 7th @7:30pm ET, Dr. Marcus Stoodley presents from Australia on “What is the surgeon trying to achieve when treating Chiari and syringomyelia?” Although the ultimate goal of surgeons is relief for their patients, the surgeon can only do so much. Dr. Stoodley explains the mechanical goals, from a surgeon’s standpoint, when operating on a Chiari and/or syringomyelia patient. Register here!

Join us on October 28th @7:30pm ET, as neurologist, Dr. Ilene Ruhoy, presents an overview on the “Pentad” patient, often seen in those with Chiari and cranial-cervical instability and tethered cord. The Pentad diagnoses are POTS/dysautonomia, MCAS, GI dysfunction (MALS, SIBO, gastroparesis), autoimmunity, and hypermobility type EDS. Register here!


In an effort to stay connected, our monthly virtual support groups will continue into 2021. We hold a support meeting for PARENTS every second Tuesday of the month at 7:00pm ET, ADULTS every last Tuesday of the month at 7:00pm ET, and HIGH SCHOOL/COLLEGE-age usually every third Sunday of the month at 5:00pm ET.

Parent Support Meeting – October 12th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – October 17th @5:00pm ET, hosted by Roman Fenner

Adult Support Meeting – October 26th @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)


October is set up to be a really big month for our ongoing research projects! Between new partnerships, new studies beginning, and research meetings being held, we have a lot going on!

Educating Clinicians Internationally
We are very excited to announce that thanks to a generous gift from the Kazim Family Trust, we will be extending our efforts even further internationally. Our goal is to educate clinicians in all countries– even those on the other side of the world– about how to best diagnose and treat Chiari, syringomyelia and their related disorders.

Congress of Neurological Surgeons Meeting
In order to facilitate that goal of educating clinicians worldwide as well as our other ongoing research projects, BJCSF representatives will be participating in specific educational seminars at the Congress of Neurological Surgeons (CNS) annual meeting later this month in Austin, Texas.

2021 Research Colloquium & Research Meeting
We will be hosting our 2021 Research Colloquium meeting on Saturday, October 16th just ahead of the Congress’ annual conference. Ten different institutions and two continents (USA and Europe) will be represented in the presentations at the Saturday meeting. Topics will range from the use of certain radiological measures in the diagnosis of Chiari and the likely outcomes of certain treatments to things like connective tissue disorders and other co-morbidities of Chiari and what they mean for long-term outcomes.


Dinner Dance for A Cure: Tickets and sponsorship opportunities are now available! Help us celebrate in Twinsburg, Ohio with a tribute to Medical and Essential Workers this year. Register here.

We are seeking auction and raffle items and if you can help out, please contact Cathy Poznik at cpoznik@bobbyjonescsf.org.

Bobby Jones Classic at Winged Foot: October 24-24, 2021 – The field is filling up! Secure your foursome today, foursomes are limited. Register here.

unite@night: There’s still time to register and raise $50 to earn your (very soft) 2021 unite@night t-shirt.  If you raise more than $50, you will earn another recognition prize.

Congratulations to the Guettler Family on the amazing job they did on their first unite@night walk in Vero Beach, Florida.  A huge shout out to the Guettler family and friends for raising over $73,000.

A huge thank you to Brad Stuver, Austin FC Goalkeeper, who came to the Austin unite@night event and signed autographs.

Great Nonprofits

If you love our work then tell the world! Stories about us from people like you will help us make an even bigger impact for people living with Chiari malformation, syringomyelia and related disorders.

Click HERE to get started! 

GreatNonprofits, the #1 source of nonprofit stories and feedback, is honoring highly regarded nonprofits with their 2021 Top-Rated List. Won’t you help us raise visibility for our work by posting a brief story of your experience with us? All content will be visible to potential donors and volunteers.