News

Each year, we kick off our Bleeding Disorders Awareness Month campaign with an impactful advocacy event in Columbia. Our State Advocacy days is an annual event to gather together to raise our voices and make meaningful change. We start off our advocacy days events on the evening before our day at the Capitol. We gather together to share a meal, listen to stories, receive national and local presentations on our policy issues, and receive guidance for the following day. This year, 70 community members and attendees from around the state and nation were involved.

We kicked off our beautiful day in the Capitol bright and early with a quick walk over to the Capitol building. Our community members gather on the steps of the Capitol building for one big group photo to start off our day. Then everyone was off to their meetings. Community members met with their representatives and senators throughout the day. These meetings consisted of groups of community members from their representative’s or senator’s districts. Everyone took turns sharing their stories and sharing the importance of our bills – H. 3934 & S.330.

Community members were greeted again by the South Carolina Lieutenant Governor, Pamela Evette. The Bleeding Disorders Community has had an outstanding relationship with the Lieutenant Governor, even presenting her with our community’s Appreciation and Partnership Award during our 2024 Annual Meeting. It’s great to see our photos with her throughout the years as it shows how our community grows and changes. This year again, we were fortunate enough to be recognized on the floor of both the house and the senate. Senator Larry Grooms recognized our young advocates in attendance this year on the senate floor. This is always a highlight of the day as each community member is invited to stand and be recognized. The entire chamber claps and it is a fantastic way to spread awareness for those living with bleeding disorders.

After an amazing event in South Carolina there was no time for rest! The following week, fourteen community members hopped aboard flights and headed to Washington, DC to join with over 400 advocates from the bleeding disorders community for NBDF’s 2025 Washington Days. Advocates participated in 248 Congressional meetings and represented 49 states and Puerto Rico. We were proud to see our community member, and amazing advocate, Candi Mitchum speak at the start of Washington Days. Candi was provided with the opportunity to share her story and to encourage each participant to raise their voice for change. Our community returned safely to South Carolina energized to continue to advocate.

As our Bleeding Disorders Awareness Campaign continued throughout the month of March and into April, our advocates remain steadfast in their determination. Our Executive Director, Sue Martin, along with our Legislative Coordinator, James Romano, have taken many meetings with state representatives as well as representatives of our state insurance companies. These meetings were productive and educational. We look forward to continuing our commitment to advocacy by providing opportunities for community members to learn what role they can play within our state and our nation. Keep an eye out for our advocacy sessions at our Annual Meeting & HELLO Conference, advocacy sessions at Teen Camp and into the fall.