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!
Neurologist, Palma Ciaramitaro, joins us on December 16th from Turin, Italy in a very special presentation. Dr. Ciaramitaro will speak (in Italian) about The Syringomyelia and Chiari Syndrome Registry: advances in epidemiology, clinical phenotypes and natural history based on a North Western Italy cohort. Her slides will be completely in English and Dr. Ciaramitaro will be able to take and answer questions live in both English e Italiano! Register here.
Keep an eye out for upcoming in-person support meetings and lectures in 2022!
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!
12/14 @6:30pm – Children Support Meeting
12/14 @7:00pm – Parent Support Meeting
12/19 @5:00pm – High School/College Support Meeting
Adult support meetings will resume in January 2022!
We’re aiming to wrap up the year strong, continuing our research work.
Take action on research now. A new study will be live in the International Patient Registry starting next month! Our goal for this study will be to determine how the so-called “5mm rule” has impacted Chiari care over the years.
Make sure you have signed up for the International Patient Registry and gone through the full consenting process by the end of this month. While you’re there, it’s last-call to fill out your responses for our telehealth study. If you have any questions, reach out to Kaitlyn!
Neurosurgical Research & 2021 Chiari Research Award. BJCSF will be in attendance at the 2021 meeting of the AANS/CNS Joint Section on Pediatric Neurosurgery December 7th through the 10th to keep up-to-date on outside neurosurgical research being done in Chiari, syringomyelia and related disorders. Additionally, we will be presenting the second annual Chiari Research Award to the investigator whose work in Chiari and syringomyelia was deemed as exemplary by a panel of his or her peers! When the winner is announced next week, we will share with you.
CSSS, Chiari Guidelines and Other Projects. In addition to all this, we are continuing to meet and work on projects such as the Chiari Surgical Success Scale, the clinical guidelines for Chiari malformation and clinical studies and trials in craniocervical instability and tethered cord syndrome– among others! BJCSF will attend in-person meetings for the CSSS and the Chiari clinical guidelines projects at the Pediatric Meeting, while important work continues at home, too.
Valentine’s Casino Night
SAVE THE DATE February 12th – Keep an eye out for ticket and sponsorship information!
Bobby Jones Classic at East Lake Golf Club
SAVE THE DATE March 27-28th – Sponsorships and Registration available soon!
“Oktoberfest” Dinner Dance for a Cure
SAVE THE DATE October 22 – Tickets and sponsorships available soon!
Thank you to everyone who participated in the 2021 unite@night walks. I’m thrilled to let you know that we raised almost $170,000. (Our Walkers Rock!!)
A little recognition to the walk chairs from the top ten walks:
Top 10 Walks Gross Raised:
Thank you to every person who helped to make this happen! The last of this years recognition prizes just went in the mail. If you did not receive yours, please let me know.
We are thrilled to roll out the 2022 t-shirt design today.
We will be opening up the walk chairperson registration soon. Feel free to email or call me if you have any questions. Thanks. Cathy Poznik – cpoznik@bobbyjonescsf.org – (330) 573-5560.
Thanks to customers shopping at smile.amazon.com, or with AmazonSmile turned on in the Amazon shopping app, everyday purchases generated over $286 million in donations to charities worldwide so far!
Shop right now through the link below and AmazonSmile will donate a portion of your proceeds back to Bobby Jones CSF at no additional cost! You can do good just by purchasing items you already need!
For Google Chrome, check out Smile Always
For Firefox, check out Smile Redirect
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Happy holidays and happy shopping!
