“The Bobby Jones Chiari & Syringomyelia Foundation has been a lifeline for Steve and Pam Fenner of Glen Allen, VA. Pam and their two children have Chiari malformation, a disorder marked by defects in the base of the skull and cerebellum that contribute to neck pain, muscle weakness, and seizures. “Being part of the foundation and connecting with other families have given us the strength to remain positive despite many setbacks,” says Steve.”
View entire Brain and Life Magazine article here.
Christie Cox, Author of “Holding It All Together When You’re Hypermobile”
What a weekend. The 2025 Thrive Summit, hosted by Bobby Jones Chiari & Syringomyelia and the Norris Lab at MUSC, brought together one of the most powerful gatherings of minds, hearts, and lived experience in Washington, D.C. From groundbreaking research to real-world strategies for surviving and thriving with Ehlers-Danlos Syndrome (EDS) and its complex comorbidities, every session, speaker, and conversation served a singular purpose: connection.
We were joined by brilliant medical experts, pioneering scientific researchers, resilient patient advocates, and passionate individuals who are studying these disorders with relentless dedication. They shared insights not just about navigating the clinical complexities, but also the emotional and social toll of living with these conditions—and how we can begin to reclaim agency over our bodies, our care, and our futures.
But the real magic? That happened in between the sessions—in the hallways, at lunch tables, in quiet corners where people who “just get it” found each other. Strangers became friends. Isolation turned into belonging. And for a few transformative days, we remembered what it feels like to be seen, understood, and surrounded by people who know.
The weekend culminated in a moving screening of “Complicated”, the new documentary film from Open Eye Pictures, followed by an intimate Q&A with the filmmaker, co-producer and one of the brave featured family members. The raw truth, tender vulnerability, and fierce spirit captured in the film echoed the very themes of the weekend—complexity, courage, and community.
And the grand finale closed out with unite@thehill, our Advocacy Day on Capitol Hill. Exhausted, overheated but armed with facts, personal stories, and an urgency we met with legislators to amplify our voices and advocate for meaningful change in the way rare and connective tissue disorders are recognized, researched, and grant supported.
To everyone who made this journey—whether across the country or across your comfort zone—we see you. We honor the physical, emotional, and mental energy it took to show up. New to this diagnosis or seasoned veteran we came together. Yes, we are overwhelmed. But we are also changed by this patient conference into a movement forward.
Let this be the reminder that as much as we push ourselves to be here, we must also pace ourselves. Advocacy, like healing, is a marathon—not a sprint. Take time for self-care. Take time to breathe. And know that you are not alone.
We are a community. And together, we are stronger and filled with hope.
On this page, 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, through our monthly newsletters. Learn about our programs, upcoming educational and fundraising events, virtual and in-person support group & Ask the Expert meetings, and research projects.
Also, check out the Global Bobby Jones CSF News page for information about our global partnerships and collaborations, along with our international news.
We look forward to sharing it all with you!
