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!


We are continuing our virtual Ask the Expert series This month our Ask the Expert series will feature neurosurgeons, Dr. Sunil Patel and Dr. Brian Dlouhy. On January 14, Dr. Sunil Patel of the Medical University of South Carolina will answer any and all questions you may have for him. Dr. Patel’s specialties and clinical interests include: spine disorders, spine & spinal cord tumors, skull base surgery, trigeminal neuralgia, and minimally invasive neurosurgery.

On January 21, Dr. Dlouhy will be online with us discussing: Chiari and Craniocervical Instability from Bony and Ligamentous Abnormalities. Dr. Dlouhy will give a short presentation and then will answer your questions. Dr. Dlouhy is a pediatric and adult neurosurgeon at the University  of Iowa Hospitals & Clinics in Iowa City, Iowa. His specialties and clinical interests include: Chiari malformations, disorders of the craniovertebral junction (CVJ), and epilepsy surgical treatment strategies, and minimally invasive surgery.

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

Bonus Sneak Peek into our February educational events… On February 3rd, a Chiari Malformations Roundtable – Live Webinar, hosted by Dr. Ellenbogen with Seattle Children’s Hospital, will feature keynote speaker, Dr. Gerald Grant, and our very own Executive Director, Dorothy Poppe. The webinar will take place on Wednesday, February 3rd @5:00pm PT.


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 – January 12th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – January 17th @7:30pm ET, hosted by Roman Fenner

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

For more information visit: bobbyjonescsf.org/Events.


The International Patient Registry got an overhaul to help us prioritize patient control and maximize research potential! The new system uses state-of-the-art technology, including privacy and security features that comply with (and exceed) all of the national and international requirements including HIPAA, GDPR, and CCPA. Our partners in this large research effort, a company called LunaDNA and the Genetic Alliance, have helped to make this overhaul possible. We can’t wait to explain just how this registry is going to revolutionize medical research in the new year and beyond!

In the new system you will be able to:

  • Answer questions about your symptoms & other topics in a new, user-friendly interface. While the old surveys are still in the process of moving over, we will be releasing smaller studies on related disorders, the COVID-19 pandemic, stress, sleep, et cetera!
  • Connect your electronic health records to your registry account. You will be able to use your username and passwords for your secure patient portals at various doctors’ offices to connect to your anonymized registry account. This will benefit research by offering more clinical data to researchers, but it can also create a handy, central location for you to view all your health records in one place— a helpful tool for patients with chronic illness!
  • Share your genetic data. Now, you’ll have the ability to contribute real genetic information if you have collected any genetic information from places like 23andMe or Ancestry.com. Researchers will be able to access your anonymized genetic data and learn more about people like you based on genetic traits.
  • Share your data with interested researchers safely. Interested researchers will be able to access data after undergoing rigorous IRB review and internal assessment to confirm their study protects patients. All data will always be anonymized and cannot be removed from the system at any time. This is a new, added level of security we’ve put in place to ensure that you control your data— no one else.
  • Choose to earn ownership shares in our partner company, LunaDNA. This is entirely optional, but LunaDNA is a company owned by people who choose to share their data. Sharing your information earns you actual shares in the company, itself. Visit the Help Center on lunadna.com for more information.
  • Gain access to up-to-date info about CM, SM & related disorders, curated by Bobby Jones CSF. As we collect more and more information and participants, we will be able to perform our own research and inspire new researchers to study even more in this field. As new publications come out, we will share them with you and to be sure that you actually get to see the research that you contributed to!
This sounds great! How do I get started?

That depends! If you have already signed up as part of the International Patient Registry, you will need to use a special link. If you’ve never participated in the registry, you will create an all new account— no link necessary!

If you are already registered for the International Patient Registry, please contact Kaitlyn Esposito to get started, if you haven’t already.

If you have never created an account before for the International Patient Registry, click here and participate in our first study of the year!


The Bobby Jones Classic is scheduled for March 28-29 at East Lake Golf Club in Atlanta, Georgia. For more details or to register:  bobbyjonesclassic.com

Save the Date:
The Casino Night date has been moved to Saturday, July 17, still at the Hilton Garden Inn in Staten Island. More details to follow!



This year, unite@night walks will run from August until November! These events, held in different locations around the country, bring together people who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome, Dysautonomia and other related disorders. They also help to foster local support networks and to support medical research, national education efforts and ongoing awareness projects that benefit families in the United States and abroad who suffer every single day from these disorders.

If you are interested in being a unite@night chairperson, we’d love to see your walk on the 2021 calendar! You can set up a walk at a location, set up a solo walk for just your group, or set up a virtual walk.  We’re willing to work with you to help out with your vision.

If you would like to submit a request to set up a unite@night walk site, please register here.

Help us unlock the answers. Each step you take, no matter how difficult, brings hope to patients and their loved ones. Be the key to a cure.

CLICK HERE AND CHECK OUT THE SPONSORSHIP BENEFITS INCLUDING… Company/family name and/or logo on nationally distributed T-shirts

Thank you to those who have already generously sponsored the 2021 unite@night events:
The Mikula Family

…we hope to add your name/company to this list!
*Deadline to be included on t-shirt is 6.1.2020

For more information, contact Cathy Poznik at cpoznik@bobbyjonescsf.org or 330-573-5560.