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!
Dr. Syed Hassan Abbas Akbari will be speaking at our Virtual Ask the Expert, on February 24th at 7:30pm ET, on the topic of “Headache Relief After Surgery in Children with Chiari I and Syringomyelia.” Register here.
Have a topic of interest? Contact: email@example.com
Introducing a support meeting for children ages 6-9 with Chiari, syringomyelia and related disorders! We all know the benefits of connecting with someone who knows just what you’re going through, let’s show our kids that they aren’t alone in this fight. Parents, accompany your child or children to the 6:30pm meeting and then stay on with us for our usual 7:00pm parent meeting!
2/8 @6:30pm – Children Support Meeting
2/8 @7:00pm – Parent Support Meeting
2/20 @5:00pm – High School/College Support Meeting
2/22 @7:00pm – Adult Support Meeting
Assessing the “5mm Rule”. Don’t forget to fill out the survey we just added to the BJCSF Patient Registry! We want to get a better sense of whether this “rule” has impacted Chiari care, and if so, then how much. You can complete the whole survey in about 1 minute here. We will only be collecting data for this study for a short period of time, so be sure to get your responses in soon and be counted!
Chiari Surgical Success Scale. This project has been IRB-approved at most sites and those sites are actively enrolling patients in the study. To learn more about this study and its goals, visit our website.
Chiari Guidelines. The work of the CNS Guidelines Committee is continuing this month. There are currently no clinical guidelines available for the neurosurgical treatment of Chiari malformation. The goal of the committee is to develop practical guidelines based on the existing medical literature and provide a better standard-of-care in Chiari diagnosis and treatment. BJCSF is acting as the patient voice throughout the entire process and we are hoping to share updates soon, as we are nearing the end of discussions.
2022 Valentine’s Casino Night – February 12, 2022
Sponsorship opportunities, tickets and other details HERE.
Donate an item for auction or raffle.
2022 Bobby Jones Classic at East Lake – March 27-28, 2022
Register, Sponsor and secure your hotel room HERE
“Oktoberfest” Dinner Dance for a Cure
SAVE THE DATE October 22 – Tickets and sponsorships available soon!
We are so excited that there are 25 walks on the books as of February 1st! Thank you so much to everyone who has registered to host a walk. This is halfway to our goal of 50 walks. Will you consider helping by hosting a walk either in-person, virtually or a solo walk? Please contact Cathy Poznik at (330) 573-5560 to find out how easy it is to help make a difference!!
The funds raised from the unite@night walks help fund research, programs that educate, and the online support groups. Sign up to be a Walk Chair here.
National Walk Sponsorship
The deadline to become a National Walk Sponsor and be included on the t-shirt is 4/1/2022. Take a look at the sponsor levels and please share it with anyone who you think might be interested.
We are planning our 2022 unite@thehill! Join us on June 5th and 6th for wellness sessions, to meet and form lasting friendships with fellow patients, and finally to meet with Representatives on Capitol Hill to make a difference for people living with Chiari malformation, syringomyelia, dysautonomia, Ehlers-Danlos syndrome, and many other related disorders. More information here.
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