At the Vanderbilt-Meharry Sickle Cell Disease Center of Excellence, education and advocacy are key components in addressing the challenges of SCD. We offer educational resources to patients, families, and healthcare providers, promoting awareness and understanding of the disease.
Annually, we sponsor a Family Retreat at The Center for Courageous Kids (CCK). This 168-acre facility provides free camping experiences for children with various medical conditions, including sickle cell disease (SCD). The Family Retreat offers a weekend of relaxation and joy, welcoming up to 30 families each spring for bonding, learning, and fun. Children ages 5-17 diagnosed with SCD and their families participate in activities designed to build connections and promote well-being. Highlights of CCK’s program include a horse barn, indoor pool, arts and crafts, miniature golf, archery, music therapy, and so much more!
Healthcare professionals from the Sickle Cell Disease Center, including Drs. Volanakis, Kassim, and Dr. DeBaun and nurse case manager Jeannie Byrd RN, MSN, and Family practice nurse practitioner Karina Wilkerson MS, FPNP from Vanderbilt’s Sickle Cell Clinic, attend the Family Retreat to provide educational workshops and hands-on support. This collaboration allows families and children to meet others facing similar challenges while doctors and staff answer real-time medical questions and provide guidance on living with SCD. The weekend retreat enables families to share their experiences and gain practical knowledge on managing SCD throughout life. Each family unit has a lodge to stay in overnight. The Center’s sickle cell doctors share meals and participate with families throughout the Friday, Saturday, and Sunday retreat. The main goals of the retreat are for children and their families to connect with healthcare providers outside the clinic, build relationships, and witness the joy that a weekend of play and laughter can bring to children and their families. Every year, the team must raise funds to support the retreat for families of children with sickle cell disease.
You can access registration for the retreat through the CCK website or at https://cck.campin1.com.