A community of 150 patients, caregivers, supporters and volunteers recently joined the Children’s Hospital at Montefiore Einstein for its Pediatric Sickle Cell Awareness Day, an engaging event focused on education, support and to share their experiences surrounding the disease.

Montefiore Einstein is committed to raising awareness about sickle cell disease (SCD), which  affects about 100,000 people in the United States, and more than 90% of those affected are Black or Latino. One in every 400 Black children is born with sickle cell anemia, the most common and severe form of SCD, which is prevalent among Bronx residents.

Organizers Kerry A. Morrone, MD, Director, Sickle Cell Program, Director, Pediatric Hematology Oncology Fellowship Program, Children’s Hospital at Montefiore Einstein, and Assistant Professor, Pediatrics, Albert Einstein College of Medicine and Kaitlin Strumph, DO, MS, Assistant Director, Pediatric Sickle Cell , Children’s Hospital at Montefiore Einstein, and Assistant Professor, Pediatrics, Albert Einstein College of Medicine, oversaw the day’s events, which featured physician discussions of transition to adult care, a panel of patients and their experience with the disease, interactive activities, and a raffle.   

“Our sickle cell patient education day was a huge success,” said Dr. Morrone,” with an inspiring patient panel discussion on transitioning to adult sickle cell disease care.” 

Bone marrow transplant physician Mahvish Q. Rahim, MD, MS, MBA, Attending Physician, Pediatrics, , Children’s Hospital at Montefiore Einstein, and Assistant Professor, Pediatrics, Pediatric Hematology-Oncology and Stem Cell Transplant, Albert Einstein College of Medicine, and adult sickle cell disease physician Opeyemi A. Ajibade, MD, MS, Attending Physician, Pediatrics, Children’s Hospital at Montefiore Einstein, Assistant Professor, Hematology, Albert Einstein College of Medicine, spoke about the transition to adult care for CHAM patients with SCD, as well as the services and medical treatments available to patients, including innovative new options like stem cell transplants and gene therapy.

”Sickle Cell Awareness Day provided a meaningful opportunity to strengthen communication between our patients with SCD and their care team about treatment options available,” said Dr. Rahim. “Patients and families also had the chance to ask questions, share concerns, and learn more about transplant and gene therapy.”

A panel of former CHAM patients shared their experiences about transitioning into adult SCD care at Montefiore Einstein’s Adults Sickle Cell Center (ASCC), while others spoke about their journeys with gene therapy and bone marrow transplant. The ASCC is the second-largest of its kind in the country, and one of only a few U.S. SCD treatment centers certified to provide gene therapy.

Talia Haviv, Senior Certified Child Life Specialist, Pediatric Hematology/Oncology and Marrow and Blood Cell Transplantation, Children’s Hospital at Montefiore Einstein, shared a presentation on Camp Life, which gives children with sickle cell and their families the opportunity to have a fun, classic camp experience while still having their medical needs met. 

Having fun and celebrating life were also big parts of the day as patients and their families got to learn more about SCD through fun art- and music-based activities including adding their artistic designs to a banner and spending time with CHAM’s therapy dog, Polly. Every child who attended the event took home a new Lego set (with a choice of Avatar and Super Mario themes), donated by the Game Changer Foundation. A raffle of New York Yankees tickets, gift cards, a tablet, a VR headset and more was also part of the day.

Haviv, May Thompson, Program Administrator and Fellowship Coordinator, Pediatric Hematology, Oncology, and Cellular Therapy, Children’s Hospital at Montefiore Einstein; and Karen Ireland, Research staff, Sickle Cell Disease Program, Children’s Hospital at Montefiore Einstein, also contributed to organizing the event, which received generous financial support from sponsors Chiesi USA, Genetix Biotherapeutics (formerly known as Bluebird Bio) and Game Changer Foundation. Other organizations at the event included Candice’s Sickle Cell Anemia Fund, God’s Love We Deliver, Hole in the Wall Gang Camp, Hear Your Song, Make-A-Wish Foundation of America, Montefiore Einstein Adult Sickle Cell Program, Bronx Accountable Healthcare Network (BAHN), Montefiore Health Home Serving Children team, and Next Step.