Arkansas Children's is the only hospital in Arkansas to diagnose, evaluate and treat children who have sickle cell disease. Your child is in good hands here at Arkansas Children’s. Here, the child will be surrounded with a care team who are experts in sickle cell disease. The care team includes a: • Haematologist (doctor who specialize in blood problems) • Nurse practitioner (a nurse with extra training who can write prescriptions) • Sickle cell specialty nurse • Apheresis nurse (a nurse who specializes in machines that draw, separate and return blood) • Social worker Your child will have access to the most advanced care and treatments, including clinical trials. Our team will teach you and your child how to live with and manage this lifelong condition. When your child becomes an adult, our social worker will seamlessly transition his or her care to the adult sickle cell program at the University of Arkansas Medical Center. Official website

The University of Arkansas for Medical Sciences (UAMS) coordinates the care of adults with sickle cell disease in Arkansas. The legislature has provided funds for UAMS to develop a program that would benefit this underserved, minority population. As UAMS improves and standardizes the treatment of patients with sickle cell disease through the Adult Sickle Cell Clinical Program (ASCCP), not only will this minority population experience relief of suffering, but the entire state will also experience an improved well-being. This centre is ready with 24/7 call centre for both healthcare providers as well as for patient and families. The Adult Sickle Cell Clinical Program realizes the primary care providers of Arkansas need easily accessible resources and support services in order to provide the best standard of care available and make treatment guidelines easily accessible. This centre also provides resources to adopt or maintain a healthy lifestyle, take steps to prevent and control complications, learn ways to cope with pain to sickle cell patients. Official website

The Hole in the Wall Gang Camp was founded in 1988 by Paul Newman to give every child no matter their illness the chance to “raise a little hell.” Including the summer Camp in Ashford, Conn, it runs 9 programs that serve more than 20,000 kids and family members throughout the Northeast each year. The Hole in the Wall Gang Camp is dedicated to providing “a different kind of healing” to seriously ill children and their families throughout the Northeast, free of charge. It’s a community that celebrates the fun, friendship and spirit of childhood, where every kid can “raise a little hell.” Goal of this camp is to ensure that every child with a serious medical condition has the chance to experience the world of possibilities that camp has to offer. Through the generosity of others, The Hole in the Wall Gang Camp community provides this unique healing experience to kids in need and their families, including those who may not be able to come to Camp. It operates on founder’s vision embedded with four core values: safety, camaraderie, possibility and appreciation. Official website

Founded in 1984, Camp Sunshine provides retreats combining respite, recreation and support, while enabling hope and promoting joy, for children with life-threatening illnesses and their families through the various stages of a child’s illness. Since its inception, Camp Sunshine has offered comfort, hope, and support to over 50,000 individuals from all 50 states and 27 countries. Camp Sunshine's program is offered year round and has the distinction of having been designed to serve the entire family in a retreat model. The program is free of charge to families and includes on-site medical and psychosocial support. Bereavement sessions are also offered for families who have experienced the death of a child from a supported illness. Official website

The Metropolitan Seattle Sickle Cell Task Force is a grass roots community based organization committed to helping people with Sickle Cell Disease in our local community. The Task Force was established in 1994 as a private non-profit organization. The Task Force works in partnership with schools, institutions, non-profit organizations, and health care providers to provide sickle cell testing and education about sickle cell disease and trait to the community. The mission of this organization is to provide education and support to the community and to enhance the overall well-being of those afflicted with various forms of Sickle Cell Disease and their families. It also works to disseminate information and provide support to people with Sickle Cell Disease, young and old. The task force desires to support individuals and families who are affected by Sickle Cell Disease or who have the sickle cell trait. It offers family education events, support groups social events, advocacy, scholarship, and Sickle Cell Camp. The members of the organization advocates for individuals and families in any way possible to enhance their well-being. Official website

John T. Horan, MD, MPH, is Associate Professor in the Department of Pediatrics at Emory University School of Medicine. Dr. Horan is a member of Children's Oncology Group and Pediatric Blood and Marrow Transplant Consortium. He sees patients at Children's Healthcare of Atlanta. Dr. Horan earned his MD from New Jersey Medical School, and he completed his residency in Pediatrics at the University of Rochester Medical Center. Dr. Horan also completed a fellowship in Adult and Pediatric Hematopoietic Stem Cell Transplantation and the University of Rochester Medical center and a fellowship in Pediatric Hematology/Oncology at Children's National Medical Center. He also holds an MPH from the University of Rochester. Dr. Horan's research interests include non-myeloablative transplant for sickle cell disease and graft versus host disease and outcomes research. Online profile

Tristan Lee is a talented model, actor, poet, and fashion designer. Tristan was diagnosed with Sickle Cell as a baby at six months old. School was always challenging for him as he was out sick from sickle cell most days. It was always a struggle for Tristan to keep up with the other kids both psychically and mentally, but through the grace of God he did and graduated on time. Despite having had a stroke early in life, Tristan has pressed forward to accomplish great things, including an almost complete recovery through therapy, dedication, and hard work, and there are many more great things yet to come for him. He does a lot of charity work advocating for the South Central PA Sickle Cell Council of Harrisburg, PA helping them raise awareness for this cause. Online profile

Dexter Darden is an American actor. He is best known for playing the role of Walter Hill in Joyful Noise and Frypan in The Maze Runner and Maze Runner: The Scorch Trials. After his father passed away in 2000, he headed to Paul Newman’s Hole in the Wall Gang Camp in Connecticut. Instantly recognizing Dexter’s unique talents and kind, sincere spirit, Mr. Newman reached out to Dexter and gave him the chance to perform in star-studded galas and Broadway shows to raise money for children with blood diseases and cancer. Dexter has been actively involved in The Sickle Cell Anemia Foundation, Children’s Hospital of Philadelphia, The Hole in the Wall Gang Camp, The Ranfurly Home Orphanage, The Boys and Girls Club and The Heart Foundation. Online profile

Dr. Flake is an attending surgeon in the Division of Pediatric General, Thoracic and Fetal Surgery and holds the Ruth M. and Tristram C. Colket, Jr. Endowed Chair in Pediatric Surgery at The Children’s Hospital of Philadelphia. He serves as Director of CHOP’s Center for Fetal Research and is a professor of Surgery and Obstetrics and Gynecology at the Perelman School of Medicine at the University of Pennsylvania. Dr. Flake’s clinical specialties include fetal diagnosis and therapy and neonatal surgery. Dr. Flake was the Director of Fetal Surgery at the Children’s Hospital of Michigan before joining the Center for Fetal Diagnosis and Treatment at CHOP in 1996. Today, he spearheads an active research laboratory focused on fetal stem cell and gene therapy. He has been at the forefront of cutting-edge studies aimed at treating genetic disorders before birth. Dr. Flake is committed to discovering ways to help children live disease-free, and is currently moving toward a human clinical trial for sickle cell disease, utilizing in utero transplantation of maternal cells to the fetus. The goal is to increase the newborn’s tolerance for a successful bone marrow transplant. Online profile

Dr. Jennifer Yu is a pediatric hematologist/oncologist at Rady Children's Hospital- San Diego and a clinical instructor in pediatrics at UC San Diego School of Medicine. She graduated from Robert Wood Johnson Medical School in New Jersey and completed both her pediatric residency and pediatric hematology/oncology fellowship at UC San Diego. In addition to teaching medical students, residents and fellows on the wards and in the clinic, Dr. Yu is on the resident clinical competency committee. Dr. Yu's clinical interests include hemoglobinopathies, such as thalassemia, bone marrow failure, bleeding and clotting disorders, and malignant hematology. Her translational research project during her fellowship was focused on inflammation in sickle cell disease. In her free time, Dr. Yu enjoys spending time with her family and spending time outdoors. Online profile