bobby jones csf news

NOVEMBER 2024

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!

Education

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!

REGISTER HERE

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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

REGISTER HERE

Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org

Support

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

Research

Chiari Surgical Success Scale updates. We’re excited to share an update on this ongoing study! To date, we’ve screened an impressive 1,462 individuals for participation. We are screening all patients that are seen by the Chiari clinics with whom we are working, regardless of whether or not they perfectly fit our study criteria. Our study requires rigorous eligibility criteria to ensure the accuracy of our findings. These criteria are essential for drawing valid conclusions about the effectiveness of Chiari surgery. Of the 1,462 screened, 280 met all criteria for enrollment and were invited to participate. We’re grateful to the 241 adults and children who have agreed to join the study. Seventy-two of these participants have already completed their final outcome measures! We need at least 250 participants in both groups (adults and children) to be fully done with the study in order to get valid data to report back on. But we are well on our way! Two additional new sites are interested in being a part of the study… more to come on that.
To provide even more transparency about our research and to get people excited about the study’s progress so far, we’re excited to launch a dedicated section of our website! In the coming months, we’ll share updates on the study’s progress, discuss the rationale behind some study decisions, and address any questions you may have! Have a question already? Contact Kaitlyn, and ask!
 
We’ll also be participating in several research conferences this month. At these events, BJCSF will be actively engaging with other organizations to share the unique perspectives of patients, caregivers, and healthcare providers living with Chiari, syringomyelia, and related disorders. Our goal is not only to learn from the work of others but also to contribute our valuable insights and experiences to help improve research and care practices across the field. By attending conferences like the 2024 PCORI Annual Meeting in Washington, DC, and the 2024 American Public Health Association Annual Meeting in Minneapolis, MN, we’re demonstrating our commitment to advancing patient-centered research and ensuring that the voices of those affected by these conditions are heard.

unite4answers

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 hereIf 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.

Events

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