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!
As you may know, the Amazon Smile initiative will shut down by February 20th. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we have 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 here to get started. With your help, we can make a difference in the lives of the community we serve!
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.
To become a 2023 National Sponsor for unite4answers and be included on the back of the t-shirt, please see the below information and send in the form or complete the sponsorship form online here. The deadline to be included on the 2023 t-shirt is 4/1/2023.
For the past few years, Bobby Jones CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening.
To keep the momentum moving forward, we must continue making our voices heard… Right now, we have the following states represented and would love to include more: Florida, Maryland, Missouri, New Jersey, New York, Ohio, Pennsylvania, Virginia, South Carolina, Texas
Register here! For additional information, visit our unite@thehill page.
This month, we will have our in-person education lecture in Charleston, South Carolina. Dr. Alan Snyder will be speaking on Thursday, February 16th at the Medical University of South Carolina, 68 President Street, Bioengineering Building, Room 112, Charleston, SC. The patient to patient discussion group will begin at 5pm and the lecture will take place at 6:30pm. Topic will be “Cutaneous Manifestations, Concerns and Considerations in Ehlers-Danlos Syndrome.” Register here.
Our virtual Ask-the-Expert will take place on Thursday, February 23rd at 7:30pm ET, with Dr. Steffi Dreha-Kulaczewski. Dr. Dreha-Kulaczewski is a researcher in the cerebrospinal fluid hydrodynamics space and will be speaking on the topic of Breath to drive your CSF flow. Register here.
Have a topic of interest? Contact: firstname.lastname@example.org
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)
Parent/Children Support Meeting – Tuesday, February 7 @6:30pm/7:00pm
High School/College Support Meeting – Sunday, February 19 @5pm
Adult Support Meeting – Tuesday, February 28 @7pm
A special thank you to the Monkton Institute for their very generous support of our CSSS (Chiari Surgical Success Scale) project. There is very little high-quality, multi-center research on Chiari disorders. To change this, a number of research centers have come together to develop the CSSS. This will be the first scale that will use symptoms, clinical signs and medical imaginginformation to identify characteristics that might predict a good surgical outcome.
The ultimate goal is to create an easy-to-use scale that neurosurgeons can use with patients in clinic when they first step through the door. The CSSS should help doctors, patients and loved ones face easier decisions when the time comes to consider surgery.
Read more about the CSSS project here.
New sites: Chiari Surgical Success Scale. We are very excited to announce that a new academic site has started enrolling for the CSSS study. Welcome to our partners at Wake Forest University in Winston-Salem, NC and to Dr. Daniel Couture, the site Principal Investigator! Learn more about the CSSS project, what it aims to achieve, and why it’s so important on our website.
FDA-readiness project: results soon. We are in the final steps of this project and are getting ready to meet with the FDA to determine their willingness to fast-track new pharmaceuticals and medical devices for the treatment of Chiari, syringomyelia and related disorders. If we receive a final OK from FDA, we will be able to start approaching pharmaceutical and device companies to do more research and development in new treatment modalities!
New project: coming soon. As we sunset one project, we launch another! We plan to start work assessing the often confusing process of transitioning care from pediatric to adult doctors for neurosurgical disorders. The process tends to be very clunky for patients, parents and even the doctors who treat Chiari, syringomyelia, hydrocephalus, spina bifida and many other disorders. Have you ever experienced this transition of care for yourself or your child? Talk about your experience on our online support group at Inspire! Share your story then stay tuned for the launch of this project to find out how you can be involved.
Casino Night “Night at the Races”
Honoring Dr. Jeffrey Greenfield, Weill Cornell Medicine
Saturday, March 4, 2023
Staten Island, New York
Purchase tickets, a sponsorship, or journal ad or make a donation here.
Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
Secure your playing spots or sponsorships now!
The Calamity Jane Charity Cup Benefiting Bobby Jones CSF
Bobby Jones Golf Course
Registration coming soon
Dinner Dance for a Cure “In Paris“
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Registration coming soon