FOR IMMEDIATE RELEASE
Bleeding Disorders Association of South Carolina Announces 2025 Fall Advocacy & Medical Symposium — Empowering Families, Building Voices, and Advancing Care
Greenville, SC — October 9, 2025 — The Bleeding Disorders Association of South Carolina (BDASC) proudly announces the 2025 Fall Advocacy & Medical Symposium (FAMS) / Family Camp, taking place October 17–19, 2025, at the Marina Inn at Grande Dunes in Myrtle Beach, South Carolina.
This annual gathering serves as one of BDASC’s most impactful educational and advocacy events, offering a full weekend of learning, leadership, and community engagement for individuals and families affected by bleeding disorders.
A Dynamic Weekend of Learning and Advocacy
FAMS brings together state and national experts to lead discussions on the latest medical advancements, advocacy strategies, and access-to-care initiatives for South Carolina’s bleeding disorders community.
This year’s featured speakers and panelists include:
- Matt Delaney, Government Relations Manager, National Bleeding Disorders Foundation (NBDF)
- Adam Alver, Policy Director, Policy & Advocacy, Hemophilia Federation of America (HFA)
- Lee Hall, Vice President of Strategic Advocacy & Partnerships, Coalition for Hemophilia B; Candidate for the FDA Blood Products Advisory Committee (BPAC)
- Tabitha Spires, South Carolina Department of Health and Human Services (SCDHHS) – South Carolina Medicaid Benefits
- Malerie Hartsell, Section Director, Children and Youth with Special Health Care Needs (CYSHCN), S.C. Department of Public Health
- Robin Jones, Nurse Coordinator, Hemophilia Treatment Centers (HTCs)
- Dr. Richard Lemons, MD, PhD, Medical Director and Division Chief, Division of Pediatric Hematology/Oncology, University of Utah
- (Virtual) Representative Carla Schuessler, District 61 (Horry County), Co-Sponsor of H.3934
- (Virtual) Lieutenant Governor Pamela Evette, South Carolina Advocate and Community Supporter
- James Romano, Legislative Coordinator, Bleeding Disorders Association of South Carolina (BDASC)
What to Expect
Over three days, participants will engage in a mix of educational sessions, hands-on advocacy training, and family-focused activities, including:
- Medical and treatment updates on gene therapy, new product developments, and comprehensive care strategies.
- Advocacy workshops centered on key South Carolina healthcare legislation (H.3934 and S.330).
- Teen and youth programs, including the CEO Program, a financial simulation to teach budgeting and decision-making skills.
- Children’s enrichment sessions presented by the South Carolina Aquarium, featuring marine life exploration and turtle art activities.
- Evening programming, including a community screening of Bad Blood: A Cautionary Tale and an optional outing to the Pirates Voyage Dinner & Show.
Eligibility and Registration
This event is open to BDASC members living in South Carolina who:
- Have a diagnosed bleeding disorder or are identified as a carrier, or
- Are a caregiver residing with someone with a diagnosed bleeding disorder.
- Registration Fee: $25 per family or individual
- Deadline: September 19, 2025 (or until capacity is reached)
- Lodging: Covered by BDASC for approved participants (within room block)
Participants are expected to attend the full weekend program from Friday at 4:00 PM through Sunday at 12:00 PM. Financial assistance is available for those in need.
A Message from BDASC
“This symposium represents the strength of our community and the progress we continue to make together,” said BDASC leadership. “With guidance from local and national experts, our families can become stronger advocates, more informed patients, and better prepared for the future of bleeding disorder care.”
About the Bleeding Disorders Association of South Carolina
The Bleeding Disorders Association of South Carolina (BDASC) is a 501(c)(3) nonprofit organization and a chapter of the National Bleeding Disorders Foundation (NBDF). BDASC’s mission is to raise awareness, advocate for improved access to care, and provide education, support, and community programming for individuals and families affected by bleeding disorders across the state.
📍 Address: Green Gate Office Park, 25 Woods Lake Road, Suite 300, Greenville, SC 29607
📞 Phone: (864) 350-9941
📧 Email: info@bda-sc.org