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

Thank you so much to everyone who participated in the October 2024 unite4answers – Austin, TX; Acworth, GA; and Sacramento, CA. We appreciate everyone who was able to be a part of these amazing events.

To date we have raised over $250,000. 2024 Incentive prizes will be ordered soon which you can earn through the end of the year, so keep on fundraising!

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.

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, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad here
Sunset Club
Seattle, Washington

Thank you so much to everyone who participated in the October 2024 unite4answers – Austin, TX; Acworth, GA; and Sacramento, CA. We appreciate everyone who was able to be a part of these amazing events. 

To date we have raised over $250,000. 2024 Incentive prizes will be ordered soon which you can earn through the end of the year, so keep on fundraising!

Join us at any of our upcoming events and check out our full events calendar here!

SAVE THE DATE FOR OUR 2025 EVENTS!!

Saturday, March 1
Casino Night – Honoring Paul Farrell, Bobby Jones CSF Chair Emeritus

Hilton Garden Inn
Staten Island, New York

Saturday, October 18
Dinner Dance for a Cure

Hilton Garden Inn
Twinsburg, Ohio

Keep an eye on our Events Calendar for more to come!