Courtney Fitzhugh first became interested in sickle cell disease when she was in college, an interest she continued to pursue throughout medical school. During medical school, she participated in the NIH Clinical Research Training Program, where she studied with Dr. John Tisdale, one of the top researchers in bone marrow transplantation for sickle cell disease. Years later, she returned to NIH as a full-time researcher. Today, Fitzhugh’s research focuses on half-matched donors, people whose donor stem cells match only about half of the HLA antigens (proteins on the stem cells) of the recipient. The procedure has the potential to greatly expand the pool of sickle cell patients who might benefit from bone marrow transplants. Her work, combined with recent improvements in immunosuppressant medications, allowed half-matched transplant procedures to become more effective. Related story

In 1979, while she was volunteering at a camp for SCD patients, Pat Corley — then a nurse manager at the Los Angeles + University of Southern California Medical Center — caught the attention of a noted hematologist, who was so impressed that he tapped her to become nurse coordinator for an NIH SCD center. Some 38 years later, Corley is still in the game, doing the work she says she loves most — educating health professionals, medical school students, and the public about grave misconceptions about the disease, all while empowering patients to live their healthiest lives. It’s work she’s received so many honors for that Corley could have rested after retiring two years ago. But she hasn’t let up. She volunteers at her former job and for other SCD advocacy groups, spreading the gospel of SCD awareness almost daily. Related story

Swee Lay Thein was educated in both Malaysia and the United Kingdom. She has long been interested in studying blood disorders, particularly the clinical and molecular aspects of sickle cell disease and beta-thalassemia. She served as clinical director of the Red Cell Centre in King’s College Hospital, where she treated a large cohort of adult patients with sickle cell disease. As a laboratory researcher, she developed a strong interest in fetal hemoglobin, the main hemoglobin in fetuses that is responsible for transporting oxygen during fetal life and in infants until they are about 6 months old. Fetal hemoglobin protects against complications of sickle cell disease by blocking the effects of sickled hemoglobin. Dr. Thein’s research explores the underlying genetic mechanisms affecting the formation of fetal hemoglobin, which could lead to new ways to reduce the severity of sickle cell disease complications, including pain. Related story

Jennifer Nsenkyire, who is originally from Ghana, came to the United States in 1995 seeking a better life for herself and her family. She earned a bachelor’s degree in finance. She now holds a full-time accounting job in a private firm. In her spare time, she enjoys walking several miles a day. Unimaginable hurdle: Nsenkyire has suffered from the complications of SCD for as long as she can remember. As a teenager, she experienced excruciating pain for days at a time and had to be hospitalized at least once a month due to her condition. Related story

Rodrick Murray was 3 months old when he was diagnosed with SCD. This condition became the backdrop of his life, often hindering it. Born in Chicago, he met his second wife, who is from Maryland, in 2002, and in 2005 he moved to the state, home of NIH. Murray went to a sickle cell convention in Washington, D.C., and ran into many people involved with the research. After that, he participated in several clinical trials. In June 2015, he went through the gene therapy protocol that changed his life. “I’m feeling good. My numbers [hemoglobin, blood iron] are good!” Murray has a son, 21, and a daughter, 19. Both have the sickle cell trait. Related story

Tesha Samuels was diagnosed with SCD at the age of 3 years. She almost lost her life several times over the years, and she recently suffered a miscarriage. But she is well aware that others are worse off than her. She has felt well enough to work consistently since she was 17, and she has been with the D.C. Department of Corrections for 10 years. Unimaginable hurdle: Every day, Samuels wakes up and goes to bed with an overwhelming amount of pain. It is always at the forefront of her mind, and she doesn’t remember one day without pain for more than 20 years. “But I try to not let it get me down. I try to do as much living as I can.” Related story

During a long hospitalization in 2005, Tosin Ola went on a search for a sickle cell blog - something that could connect her to others like her. A practicing nurse then, she couldn’t find what she needed, so she started her own, and it became so wildly popular that two years later, Ola launched the Sickle Cell Warriors website, a portal of information for sickle cell patients, families, and health professionals. She also started a Facebook page - now with nearly 21,000 members - all while working on a dual degree in nursing and business administration and raising two boys. Her activism around building community has garnered Ola national attention and endless kudos. Related story

It wasn’t until her second year in medical school at the University of Pennsylvania that Marjorie DeJoie-Brewer found out that she had SCD. She had never had to manage pain quite like that, and “it was a steep learning curve,” she says. But learn, she did, quickly discovering that treatment options were scarce. So when she finished her training, she had an idea: Why not use her expertise in internal and rehabilitation and sports medicine to help SCD patients learn how to take better care of themselves? Now, in addition to all manner of volunteer efforts, DeJoie-Brewer wears three hats in service to the SCD cause: medical director for her local SCD association, research clinician at Children’s Hospital, and owner of her own private wellness practice. Related story

For many years, John Tisdale has been working on strategies to cure sickle cell disease by replacing the bone marrow cells that give rise to sickled red blood cells with bone marrow cells from a donor who does not have the disease. That transplantation strategy has shown remarkable results in children with the disease. Tisdale developed a modified transplant technique that is chemotherapy free to make it safer and more effective for adults and the technique is beginning to show great promise in patients undergoing this modified procedure. In August 2017, his research on bone marrow transplantation was featured in “First in Human,” a three-part television documentary produced by the Discovery Channel. It includes a compelling segment about a patient with sickle cell disease who underwent a bone marrow transplant procedure. Tisdale is currently leading a multi-center nationwide study to test the effects of an experimental gene therapy protocol for sickle cell disease. Related story

Jennelle Stephenson was diagnosed with SCD at birth, and it has been a challenging journey ever since. She has had pain episodes so intense that she temporarily lost mobility in her extremities. Most of her crises occur out of the blue, without warning. “Living with this disease is a scary, unpredictable rollercoaster. Every morning when I wake up, I have to plan my day as if I were going to go into crisis. Whatever I do and wherever I go, I have to make sure that I have a plan and the proper supplies if a crisis were to occur.” Despite the challenges, Stephenson is currently pursuing a master’s degree in health care administration. Related story