Bleeding Disorders Association Of South Carolina

BDASC Advocacy/Legislative Days in Columbia Our annual Advocacy and Legislative Days event in Columbia was attended by approximately 75 individuals, including community members living with bleeding disorders, healthcare providers, local and national partner organizations, representatives from the South Carolina Department of Health and Environmental Control, Children with Special Health Care Needs, and our valued industry partners. The event provided critical advocacy awareness and training for attendees, helping to build understanding of current healthcare access initiatives supported by the Chapter. It also served as a platform to voice community concerns and to educate elected officials about the real-life challenges of living with bleeding disorders. Informational materials and resources were distributed to state agencies and government representatives to strengthen their understanding and support of our cause.

Rural Outreach Support Programming: The Voices of 46 In 2024, BDASC conducted over 60 in-person educational outreach programs across South Carolina, reaching communities in the Upstate, Midlands, and Lowcountry regions. These efforts reduced the need for long-distance travel and ensured that families living in rural and underserved areas had access to critical information and support. Program topics included scholarship and camp opportunities, insurance navigation, healthcare policy updates, school and employment resources, and advocacy training. Through this extensive outreach, we were able to provide educational and networking support to hundreds of families throughout the state. As part of our commitment to awareness, BDASC led efforts during National Bleeding Disorders Awareness Month in March, securing seven proclamations from state, county, and city officials to recognize and elevate the visibility of bleeding disorders across South Carolina. In addition to these efforts, we launched a statewide initiative to proclaim special days of awareness specifically honoring our Von Willebrand Disease (VWD) and rare bleeding disorder communitiesensuring their unique challenges and needs received the recognition they deserve.

Mens, Womens, Young Families, VWD, and Rare Support Groups BDASC facilitated 16 targeted support group activities throughout the state, engaging individuals from various regions and diverse bleeding disorder communities, including those with Von Willebrand Disease (VWD) and rare bleeding disorders. These programs served men, women, young families, teens, and children, offering both educational content and emotional support. Each gathering was designed to foster empowerment, build lasting friendships, and provide a space where individuals could share experiences, learn from one another, and navigate the challenges of living with a bleeding disorder together.

Family Educational / Health Equity Summit This three-day weekend event was available to individuals and families free of charge with direct and immediate family members who either have a bleeding disorder, are carriers of a bleeding disorder or have an immediate family member affected. It was hosted in the upstate to provide educational and supportive services, including advocacy training and awareness to our community members throughout the state. Education, supportive services, and family connections with community members was an optimum outcome of this weekend event. This year, we support a health equity summit within the event to address health inequities within the South Carolina Bleeding Disorders Community. Attendees included 38 families, approximately 165 participants, speakers, and guests. We provided an educational and networking component specifically designed for families with children ages 0-6, 7-12, and our teens 13-18. We also provided simultaneously an adult educational track for our childless adults. Exhibiting of treatment therapies and services was available throughout the event. We provided multiple sessions throughout the weekend with national educators on varies bleeding disorders issues addressing their needs to include insurance education, school and healthcare self-advocacy, treatment, research, local and national healthcare public policies updates and other related educational and health equity needs. This event was free of charge to all participants.

Newsletter, Website, and E-Blasts BDASC maintained strong and consistent communication with our community through a variety of digital and print channels. Our quarterly newsletter featured updates on Chapter activities, national news, treatment product information, educational articles, and member highlightsserving as a vital resource for staying connected and informed. Our website continues to be a central hub of support and education, offering resources for individuals and families affected by bleeding disorders. In addition, we distributed weekly e-blasts to over 2,000 subscribers nationwide, sharing timely updates on events, advocacy efforts, research, and educational opportunities.

Winter Year-End State Meeting and Holiday Celebration Our Winter Year-End State Meeting and Holiday Celebration welcomed over 145 participantsincluding adults, children, and teensfor a day of reflection, celebration, and education. This one-day event served as the Chapters final community gathering of the year, highlighting BDASCs accomplishments and program impacts. In addition to festive holiday activities for all ages, the event featured an educational session focused on strengthening advocacy skills, empowering attendees to continue engaging in the community and with policymakers throughout the year.

The Carolina Crew North and South Carolina Teen Retreat The Carolina Crew Teen Retreat brought together 30 teens, ages 1318, from across North and South Carolina for a four-day weekend dedicated to growth, connection, and empowerment. Open to teens living with a bleeding disorder, as well as those with an affected sibling or parent, the retreat offered a supportive environment to foster friendships, independence, and resilience. Participants took part in a variety of educational sessions and outdoor team-building activities, helping to strengthen peer relationships and develop a reliable support network. A key focus of the retreat was encouraging teens to advocate for themselvesparticularly during the challenging transition to adulthood. A special session was held to build self-advocacy skills, while mentorship opportunities provided guidance and reassurance in navigating life with a bleeding disorder.

Washington Days In March, BDASC proudly represented South Carolina at the national Washington Days advocacy event in Washington, D.C. Alongside over 445 advocates from across the country, our delegation engaged in seven meetings with U.S. Congressional offices to discuss continued access to care and treatment for those affected by bleeding disorders. We provided financial assistance to fourteen community members, empowering them to participate in federal-level advocacy and to share their personal stories with lawmakers.

National Annual Meeting Education and Research Support As an active chapter of the National Bleeding Disorders Foundation and a member of the Hemophilia Federation of America, we strongly encourage participation in national events. This year, we provided financial support to eight individuals and their families to attend these important national meetings. In addition, we contributed to bleeding disorder research initiatives and supported global efforts through funding provided to the World Hemophilia Foundation. These efforts ensure our community stays informed and engaged with the latest advancements and global perspectives in care and advocacy.

BDASC Chapter Day at Camps The Bleeding Disorders Association of South Carolina partnered with the South Carolina Hemophilia Treatment Centers and the State Department of Health and Environmental Control to host special Chapter Days at summer camps across the state. These events were designed to support children living with bleeding disorders who are patients of Prisma Health Midstate and Upstate. To ensure accessibility, BDASC provided travel assistance for families in need of transportation support. Each camper received a Chapter Camp Bag filled with fun and useful items, and all camp sessions featured a BDASC-sponsored Ice Cream Social. These special touches helped create a supportive and joyful environment for learning and connection. Camp experiences offered children the chance to build self-confidence and independence, with additional mentoring from BDASC volunteers to reinforce positive self-help and life skills. Our involvement also extended to Camp Courage and the Brave Blood family camp hosted by Prisma Health Upstate HTC in Greenville, ensuring continuity of support and encouragement across all regional programs.

Public Awareness

Emergency Assistance Program and Scholarships BDASC continued its commitment to supporting families and individuals impacted by bleeding disorders through our Emergency Assistance Program and Scholarship Fund. In 2024, we provided direct financial aid to 63 individuals and families, totaling over $26,000. This vital support helped community members facing unexpected financial hardship due to their medical condition. In addition, BDASC awarded four college scholarships to eligible students affected by bleeding disorders, helping them pursue higher education while managing the challenges of their condition. These initiatives reflect our dedication to improving quality of life and long-term success for our community.

Par for the Clot Charity Golf Awareness Fundraiser Now in its tenth year, our "Par for the Clot" golf tournament continues to grow as a successful fundraising and awareness initiative. With 175 participants, including volunteers and community members, the event raised vital funds to support BDASCs education programs, advocacy work, and contributions to national research. Beyond fundraising, this event served as an educational outreach effort, helping the broader public better understand the physical, emotional, and financial impact of a bleeding disorder diagnosis on individuals and families.

STEP for Bleeding Disorders Walk for Hemophilia and Bleeding Disorders Our annual STEP for Bleeding Disorders Walk is a key fundraiser and awareness campaign for BDASC. This community event drew over 200 participants from across South Carolina. More than just a walk, it encourages fitness and well-being among individuals with hemophilia and other bleeding disorders while educating the general public. Funds raised from the walk directly support our mission-driven programs and services, expanding our reach and deepening public understanding of bleeding disorders.

Virtual Innovation Program (VIP) In response to the COVID-19 pandemic, BDASC continued the Virtual Innovation Program (VIP), originally launched in 2020. The mission of VIP is to provide ongoing education, support services, and facilitate connections for our members using managed educational tools, such as iPads. Through the service of Mobile Device Management, we are able to deliver web clips, videos, apps, and URLs tailored to our communitys needs, along with Zoom virtual meeting capabilities. The program has been embraced by 82 families and individuals who have enrolled, offering a flexible, accessible way to stay engaged and informed. Given the success of this educational pilot, BDASC plans to continue the VIP, providing this valuable resource to additional members as funding allows for the acquisition of additional educational tools.

Annual Adult Connections Retreats and Symposiums In addition to educating families with children and teens, we hosted dedicated retreats for adults in our community. These weekend gatherings offered opportunities for networking, peer support, and education directly from individuals and families living with bleeding disorders. The event welcomed 80 adult participants and focused on topics such as mental health, relationships, men and women's health, and more. Attendees reported a strong sense of belonging and connection, reinforcing the core mission of our organization through community empowerment.