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!
This month, we will have two virtual Ask the Expert lectures. On Thursday, June 23 at 7:30pm ET, Dr. Rabia Qaiser, Pedatric Neurosurgeon at Baylor Scott & White McLane Children’s Specialty Clinic in Temple, Texas, will be speaking on a topic TBA. REGISTER HERE.
Dr. Jogi Pattisapu will be speaking on Thursday, June 30 at 7:30pm ET. Dr. Pattisapu is a neurosurgeon, practicing at the University of Central Florida. 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)
*UPDATE: We will be hosting the Parent and Child Support Meetings quarterly. Our next meeting will take place the second Tuesday in August. Keep an eye out for that registration link in the coming months.
High School/College Support Meeting – Sunday, June 26th @5pm
Adult Support Meeting – Tuesday, June 28th @7pm
CSF Hydrodynamics Symposium.
This month, we host the 2022 International CSF Hydrodynamics Symposium in Gainesville, Florida. After postponing for two years due to the COVID-19 pandemic, we are finally able to meet safely.
These meetings are absolutely essential to understand the basic science and causes of Chiari, syringomyelia and related disorders of abnormal cerebrospinal fluid flow. Thanks to this year’s organizers Dr. Marianne Schmid Daners and Dr. Malisa Sarntinoranont for an outstanding program. Our very own SEA Board member Dr. Petra Klinge will be one of this year’s plenary speakers!
Learn more about the symposium at the website for the International Cerebrospinal Fluid Dynamics Society.
International Patient Registry.
NEW: Understanding the Cranio-cervical Junction
The cranio-cervical junction is the area of the back of the head that is involved in disorders like Chiari, cranio-cervical instability and other conditions. Many of these disorders are poorly understood. In order to facilitate better studies and future answers, we have launched a study to better understand the symptoms and various issues that patients with these conditions may be experiencing. The first survey is available in this study, but more surveys will be added as we move forward this year.
The first survey has to do with the burden of head/neck pain in patients with cranio-cervical junction disorders. We are currently planning a pipeline collection of studies to learn more about cranio-cervical instability. If you are interested in this area of research, please consider getting involved!
STILL COLLECTING DATA: The 5mm Rule
The so-called “5mm rule” in Chiari malformation treatment has come into question because it does not accurately predict symptom severity or treatment success. We want to know if this “rule” has impacted the likelihood of accessing neurosurgical Chiari care over the years.
We are hoping to collect more data for this study to get a highly statistically significant result. The more people who participate, the better!
CLOSED: Telehealth in Chiari & Syringomyelia.
We are no longer collecting data for the study into the potential usefulness of telehealth in Chiari malformation and syringomyelia.
We hope to analyze this data soon and turn around the results to participants in the registry before everyone else. Make sure you are registered and active in our current studies to stay ahead of the curve!
The 6th CSF Hydrodynamics Symposium will take place in Gainesville, Florida on June 16th and 17th. Keynote speakers include Dr. Maria Lehtinen, Ph.D. from Harvard University and Dr. Petra Klinge, MD, PhDfrom the Warren Alpert Medical School of Brown University. More information on the Symposium website.
SAVE THE DATE! Dr. Tygh Wyckoff, Bobby Jones CSF Board of Trustees, and Dr. Sarah Menashe are hosting Cabs for Chiari at DeLille Cellars in Woodinville, Washington. Join everyone for food, music and libations to benefit the Bobby Jones Chiari & Syringomyelia Foundation. If you are interested in attending or donating, you may do so here.
“Oktoberfest” Dinner Dance for a Cure
SAVE THE DATE October 22 – Tickets and sponsorships available soon!
International Night of Light Gala
We will be honoring Dr. Richard Ellenbogen and Professor Concezio di Rocco in Paris, France on Friday, November 18th with a pre-Gala event on November 17th.
We are so excited that there are 36 walks on the books, including Solo walks. Thank you so much to everyone who has registered to host a walk. It’s not too late – you can still register to host a walk – big or small. 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 here.
A huge shout out and thank you to the 2022 National unite@night Sponsors. We appreciate you so much!!! T-shirts are going to print this week.
It was hot weather and hot topics that brought all of us together this Sunday, June 5th and Monday, June 6th in our nation’s capital for the annual Bobby Jones CSF unite@thehill event that included a half-day wellness seminar followed by advocacy meetings with members on The Hill.
Dorothy Poppe and the amazing staff from the Foundation rounded up a great array of speakers from future doctors involved in cutting-edge research of the genetic mutation responsible for hypermobile Ehlers Danlos Syndrome, to skilled PTs, psychologists and inspiration from fellow patients sharing how they’ve overcome some of this hurdles of a chronically ill life – it was a wellness day to be treasured for all. Families from across the US, caregivers and patients came together to learn, support, and prepare to take their passion to the Hill for meetings with members of Congress. Multiple meetings were held both virtually and in person with various state representative members graciously agreeing to hear from constituents on issues facing the rare disease community. Together we stood with purpose and passion for our community to be heard and to sustain research funding support from our leaders for diagnosis like Chiari, Syringomyelia, hypermobility and more.
Special thanks to our staff members, Cathy Poznik, Mary Poppe, and Kaitlyn Esposito, of the Foundation who made this miracle on the Potomac happen. We’re already planning for next year and look forward to having more opportunities for patients and their caregivers to participate.
– Christie Cox, 2022 unite@thehill attendee
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