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!
Please consider supporting our 2024 Annual Fund to keep all of our important initiatives moving forward. Donate here.
We can’t do it without you!
Every dollar you donate is put to work exponentially. These pages highlight the work your donations have made possible!
IN PERSON EDUCATIONAL LECTURES
Wednesday, November 6, 2024
Medical University of South Carolina
68 President Street
Bioengineering Building, Room 110
Charleston, SC 29403
5:00pm Patient to patient discussion group
6:00pm Break
6:30pm Lecture
Expert: Susan Chalela, MPT
Topic: Why Neuroplasticity for Ehlers-Danlos Syndrome Works!
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Tuesday, November 12, 2024
Intermountain Primary Children’s Hospital
100 Mario Capecchi Drive
3rd Floor Auditorium
Salt Lake City, UT 84113
5:15 – 5:30pm – Registration and refreshments
5:30 – 6:30pm – Introductions and support meeting
6:30 – 7:45pm – Lectures
Expert Speakers and Topics:
Dr. Rajiv R. Iyer – Scoliosis
Mindee Kunkel, RN, PNP – The Patient Experience
Dr. Douglas L. Brockmeyer – The Chiari Comorbidity Conundrum
Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org
Are you looking for support but maybe aren’t ready for a face-to-face group meeting yet? Maybe the timing of the meetings aren’t good for you? You can join our online support group on Inspire.com – Chiari & Syringomyelia Unite.
We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET and for ADULTS & CAREGIVERS every last Tuesday of the month at 7:00pm ET.
Adult & Caregiver Support Meeting – Tuesday, November 19 @7pm
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.
Check out the current lineup for the 2024 unite4answers events here. If you are interested in helping out but cannot put together an in-person event, please consider participating in a solo walk. Just complete this form and select solo walk from the drop-down menu. A customized fundraising link will be sent to you that you can share with family and friends. AND you can earn a t-shirt and other incentive prizes based on what you raise! See attached incentive prizes here.
A huge shout out and thank you to the 2024 unite4answers National Sponsors. We appreciate your commitment to help make a difference for the millions of families affected by these disorders.
We would love to have event attendees send in the unite4answers coloring pages. Feel free to download the pages here and make sure to send in a copy so we can add them to the Facebook Bobby Jones CSF coloring book photo album.
If you are interested in helping out and cannot put together an in-person group event, please consider participating in a solo walk. Just complete the information here and indicate “solo walk” in the comments section of the form. A customized fundraising link will be sent to you that you can share with family and friends. You can also earn the 2024 t-shirt and other incentive prizes based on what you raise. See incentive prizes here.
Bobby Jones CSF is committed to helping the over 3.5 million people in the United States, and my more worldwide, who are living with Chiari malformation, syringomyelia, and related disorders. Our fundraising supports the organization’s critical research initiatives and provides comprehensive support services and educational programs to everyone affected by these disorders. Join us at an event near you!
Saturday, October 19
Dinner Dance for a Cure
Purchase tickets, sponsorship, or journal ad here
Hilton Garden Inn
Twinsburg, Ohio
Friday, November 8 – Sunday, November 10
Mt. Pleasant Charity Open
Registration and Sponsorships here
Patriots Point Links
Mt. Pleasant, South Carolina
Saturday, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad here
Sunset Club
Seattle, Washington