Patient Conference
In June 2025, we hosted the first Together We Thrive Summit in partnership with The Norris Lab at MUSC. The weekend included educational presentations, wellness seminars, fun family activities, and meetings with Congresspersons to advocate for patients living with chronic illness. Patients and caregivers from around the country came to Washington, DC to empower themselves and to speak on behalf of the millions of others affected by Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and other disorders.
Our Board of Directors wanted to ensure people were able to attend and lowered registration costs to $50/person. Actual costs per person for this conference were $230 and were funded entirely by Bobby Jones CSF. In all, we were so grateful to meet attending patients/caregivers, hear their stories, and watch as so many new friendships blossomed. We stand firm in our mission to one day find real answers for so many patients and families that struggle!
You can check out the photos from the 2025 Together We Thrive Summit in this Google Photos album. You can also learn more about the Summit from people who attended!
The Bendy Pediatrician, Dr. Sarah Cohen Solomon, wrote about her experience on her blog: “…what truly moved me were the presentations from patients, friends, and colleagues who spoke passionately about the critical importance of putting patients at the center of research.”
Christie Cox, author of Holding It Altogether When You’re Hypermobile and EDS S.H.A.R.E. contributor, also wrote about her experience as a presenter and attendee.
“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.”
You can read Christie’s recap in full on our What’s Happening page.
Educating an empowering patients and caregivers has been and will remain one of BJCSF’s primary goals. That’s why we recorded all the presentations we could to make them available after the fact for attendees to review and for access to those who were unable to join us in DC.
Russell “Chip” Norris, PhD
Professor, Regenerative Medicine & Cell Biology | Medical University of South Carolina
Cortney Gensemer, PhD
Fellow, Regenerative Medicine & Cell Biology | Medical University of South Carolina
Anne Maitland, MD, PhD
Associate Professor, Rheumatology & Immunology | Medical University of South Carolina
Sunil Patel, MD
Professor, Neurological Surgery | Medical University of South Carolina
Paige Babb, MGC
Certified Genetic Counselor | Medical University of South Carolina
Susan Chalela
Founder & Clinician | The Chalela Physical Therapy Institute for EDS & Cervical Instabilities
Michelle Nichols, PhD, RN
Associate Professor, College of Health Professions | Medical University of South Carolina
Sarah Merritt, MD
Clinician, Anesthesiology & Pain Management | University of Maryland / Lifestream Health
Alissa Zingman, MD, MPH
Clinician, Orthopedics & Preventive Medicine | PRISM Spine & Joint
Moderator: Molly Griggs
Panelists: Cortney Gensemer, PhD, Roman Fenner, Sophie Strompf
Beth Marks, MPT
Clinician, Physical Therapy
Linda Bluestein, MD
Clinician, Anesthesiology & Integrative Pain | Hypermobility MD
Varsha Radhakrishnan, MD
Consultation-Liaison, Transplant, Emergency Psychiatrist | Tufts Medical Center
Radhakrishnan Presentation Slides
Elizabeth M. McRae, PhD
Pediatric Psychologist | University of Alabama at Birmingham
Christie Cox, BCPA
Advisor, Author and Advocate
Molly Griggs, M.Ed.
Operations & Patient-Science Coordinator | The Norris Lab at MUSC
Julie Rauch, RN, BCPA
Patient Advocate
A big part of this year’s Summit was getting involved in advocacy efforts on Capitol Hill. We were thrilled that so many Summit attendees were willing to go to The Hill and talk directly to their Congressional representatives’ staffers about issues that matter most to patients and families living with these disorders.
You can learn more about some of the policies we championed in DC on our website.
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