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!
Dr. Patricia Meegan will join us on May 13th at 7:30 PM ET to talk about Physical Therapy. More specifically: Manual Physical Therapy for the head with a focus on why it is important to have proper alignment of head on neck and how that will impact overall Chiari Malformation. Register here.
Continuing our international outreach with our Virtual Ask the Expert Series, Dr. Cyrille Capel of Centre Hospitalier Universitaire d’Amiens, Amiens will be giving a presentation on Chiari I Malformation completely in French! On May 25th at 11:00 AM EST (5:00 PM á Amiens). Registration Available Soon!
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 – May 11th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)
High School/College Support Meeting – May 16th @7:30pm ET, hosted by Roman Fenner
Adult Support Meeting – May 25th @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)
We’re going to start highlighting new breakthroughs in research and recent papers by members of our SEA Board or partners.
Henderson FC Sr, Rowe PC, Narayanan M, Rosenbaum R, Koby M, Tuchman K, et al. Refractory Syncope and Presyncope Associated with Atlantoaxial Instability: Preliminary Evidence of Improvement Following Surgical Stabilization. World Neurosurg. 2021;149:e854-e865.
Dizziness, lightheadedness and fainting can be common problems in patients with instability issues of the neck. Dr. Henderson and his colleagues looked at a small group of 20 patients who underwent fusion surgery for atlantoaxial instability. These patients all had connective tissue disorder, severe pain and neurological issues and had previously tried nonsurgical options that were not effectively treating the issues.
The big news out of this paper was that all of the patients in the study had either an improvement or full resolution of their dizziness or fainting symptoms after undergoing a fusion. This paper is an important first step in providing scientific evidence of the connection between dysautonomia and instability or connective tissue disorders. The full-text of this paper is freely available online to read.
Making our way across the country…
We are looking for 24 more walk sites for 2021. Can you help us out by doing a solo walk, virtual walk or in-person walk? Contact Cathy Poznik at firstname.lastname@example.org or (330) 573-5560 for more information.
Please consider joining the amazing team to help make a difference. To be a chairperson of an in-person walk or virtual walk with your own campaign fundraising module created, please register here and we will be in touch with you to complete the details: https://give.classy.org/2021unitenightchair
To register as a solo walker to raise funds and earn prizes, please register here: https://give.classy.org/solo_virtual21
LAST MONTH TO BECOME A NATIONAL SPONSOR AND BE INCLUDED ON THE NATIONAL WALK T-SHIRT – 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…we hope to add your name/company to this list! *Deadline to be included on t-shirt is 6.1.2020
Opening May 1st! Bobby Jones Classic at Winged Foot Individual & Foursome Registration is now open for the Bobby Jones Classic at Winged Foot. Sponsorships are still available: bobbyjonesclassic.com. For more information contact Mary Poppe at email@example.com.
PGA Championship at Kiawah! Kiawah Spirits is hosting a tasting of THE CLOVER for the Bobby Jones Chiari & Syringomyelia Foundation on Friday, May 21st from 3:00 – 7:00pm.
Come join us to learn more about Bobby Jones, taste THE CLOVER and make it part of your home bar collection while supporting the work of the Bobby Jones Chiari & Syringomyelia Foundation. Tasting will take place at Kiawah Spirits located at at 615 Freshfields Drive in Kiawah, South Carolina. Hope to see you there!
“Resort” Casino Night – July 17, 2021 – Staten Island, New York
Bobby Jones Classic at Winged Foot – October 25, 2021 – Mamaroneck, New York. More info or register here.
International Night of Light Gala – November 20, 2021 – Washington, DC