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 health care 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!
Health care professionals from the Sickle Cell Disease Center, including Drs. Volanakis, Kassim and DeBaun, 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 Courageous Kids website.
Innovative Research at the Vanderbilt-Meharry Sickle Cell Disease Center of Excellence
Research is central to our mission of improving outcomes for individuals with sickle cell disease. Our investigators are international leaders committed to translating scientific insights into practical solutions that enhance patient care. Our research spans several focus areas, including:
- Development of new treatment strategies
- Pain management innovations
- Stroke prevention
- Advancing disease-modifying and potentially curative therapies
Our studies include efforts to reduce complications in pregnancy among women with SCD in Ghana, prevent priapism in Nigeria and address nutritional needs and stroke risk in children with SCD. We also engage in initiatives that examine variations in care and outcomes across populations.
Our medical student research program welcomes participants from Meharry Medical College and the University of Puerto Rico, nurturing emerging leaders in medicine at non-research-intensive medical schools.
Our dedication to clinical excellence, discovery, and patient-focused research distinguishes our program regionally, nationally and globally.
The Vanderbilt-Meharry Sickle Cell Disease Center of Excellence, under the leadership of Dr. Michael R. DeBaun, is at the forefront of groundbreaking research aimed at transforming the lives of individuals with sickle cell disease (SCD). Our current NIH-funded projects exemplify our unwavering commitment to innovation, global collaboration, and the pursuit of health equity.
Stroke Prevention in Nigerian Children with Sickle Cell Disease (SPRING Trials)
In regions like Nigeria, where SCD prevalence is high, the risk of stroke among children is a pressing concern. Our SPRING trials are pioneering efforts to evaluate the efficacy of hydroxyurea therapy in preventing strokes in Nigerian children with SCD. By tailoring interventions to this unique population, we aim to establish life-saving treatment protocols that can be implemented globally.