MARCH 2021

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!


This month, our Ask the Expert series will feature Dr. Gabe Haller, Jennifer Morgan, and Michael Liner.

Dr. Gabriel Haller will join us on March 11 at 7:30 PM ET for our Virtual Q&A. Dr. Haller has a PhD in the area of Human and Statistical Genetics and is an Assistant Professor of Neurological Surgery, Neurology, & Genetics, as well as the Director of the Random Saturation Mutagenesis Core at the McDonnell Genome Institute at Washington University. The goal of his research is to identify and characterize genetic variation that leads to various neurosurgical and/or neurological disorders in humans. He will be presenting and answering your questions on The Genetics of Chiari I.

A Q&A will also take place at 7:30 PM ET on March 18. Jennifer Morgan, Esq., is the founder of Impact Disability Law based in Denver, Colorado and has been a practicing attorney since 2007. Michael Liner, Esq. is one of the best Social Security Disability Lawyers in Ohio and serves on numerous community and non-profit boards. They will be answering your questions on  Social Security Disability Law.

Send your questions to us in advance or log on with us virtually and ask them live! For more information visit: bobbyjonescsf.org/Events.


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 7:30pm ET. See this month’s schedule below and join us!

Parent Support Meeting – March 9th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – March 14th @7:30pm ET, hosted by Roman Fenner

Adult Support Meeting – March 23rd @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)


The proceedings from the 2019 London UK Roundtable on craniocervical instability are complete and available on Lulu… The situation in the U.K. for those living with Chiari malformation and cervical instability has been extremely challenging, marked by delays in diagnosis, and difficulty of access to appropriate medical imaging and treatment options. In 2019, Bobby Jones CSF and The Ehlers-Danlos Society partnered to bring together experts from around the world to discuss the current knowledge and understanding in surgical and conservative management recommendations for patients with hypermobility and syndromes associated with the craniocervical junction. Both organizations were honored to bring their experience to The Royal Society of Medicine in London.


Making our way across the country!

Help us fill up this map for 2021… virtual, in-person, and solo walk options available – whichever option allows you to stay safe while having fun. Register here:  https://bobbyjonescsf.org/unitenight

We’re also looking for additional walk chairpersons! If you’re interested in hosting an in-person, virtual or solo walk, register here. Thank you to all chairpersons who have already registered!

All walk chairs, or anyone who wants to learn more about chairing a walk, are welcome to join us for Tee Time…


The Bobby Jones Classic will be held on March 28-29 in Atlanta, Georgia at East Lake Golf Club. COVID safe protocol is in place for the tournament and reception dinner at the Whitley Hotel.  Click the link to register or for more information.  https://www.bobbyjonesclassic.com.

You should have received a “Save the Date” for the “Resort” Casino Night in July.  Check out the Events page for more information. More information here.

Other upcoming events…

Dinner Dance for a Cure – October 23, 2021 – Twinsburg, Ohio

International Night of Light Gala – November 20, 2021 – Washington, DC