Christen Dukes founded the Arts Over Odds Foundation to provide arts opportunities for children and young adults living with health conditions and disorders. His own story is central to that work: he was born three months premature, weighing 2 pounds, 5 ounces, and doctors feared he would not survive his first 24 hours, FOX13 Memphis reported. He did survive — but physicians predicted that if he lived, he would be confined to a wheelchair and unable to talk or walk. Decades later, the Memphis man runs his nonprofit and shares his experience to show that a diagnosis does not have to define a life.
Dukes has both cerebral palsy and sickle cell disease, an inherited blood disorder that can cause severe pain and potentially serious complications, according to FOX13 Memphis, which first reported his story. He is sharing his experience during Sickle Cell Awareness Month, with the goal of helping people better understand a disease that, in his words, offers the chance for a great quality of life despite its challenges.
How Sickled Cells Disrupt the Body
Normal red blood cells are round and flexible, but in sickle cell disease, the cells can become hard and crescent shaped. Those misshapen cells can block blood flow and prevent oxygen from reaching parts of the body, causing tissue damage and a painful episode known as a pain crisis, per the station's report. Dr. Dale Criner, chief medical officer at Methodist Germantown Hospital, said sickle cell disease is more than a pain crisis or pain disorder — it can affect the heart, lungs and brain.
A pain crisis can strike at any point, with little or no warning, and does not necessarily require a trigger, according to the station's report. Dukes describes his sickle cell pain as ranging from stabbing sensations to dull aches.
Certain precautions can help lower the risk of some crises, though they do not prevent all of them. Avoiding extreme heat, staying well hydrated, avoiding overexertion, and treating infections early are all steps that can reduce risk, the report indicates. Dukes said he experienced sickle cell differently in his mid-to-late 20s, a shift that reflects how the disease can evolve as patients age.
Memphis Sits at the Center of Sickle Cell Care
Sickle cell disease affects many families across the Memphis area, and the numbers help explain why. A 2016 study published in Pediatric Blood & Cancer found the birth prevalence of the disease among African Americans in Shelby County was 1 in 287 live births — notably higher than the nationally reported rate of about 1 in 365 live births among Black individuals, according to research indexed on PubMed. Statewide, population-based data from the Tennessee Sickle Cell Data Collection program showed that 66.1% of all infants born with sickle cell disease in Tennessee between 2008 and 2019 lived in Shelby and Davidson counties, per findings published in Frontiers.
That concentration has made Memphis a hub for treatment and research. Dukes received care as a child at St. Jude Children's Research Hospital, which received its first-ever research grant in 1958 to study sickle cell disease and now treats roughly 900 children annually through one of the largest pediatric sickle cell programs in the country, according to St. Jude Children's Research Hospital. That pediatric education helped Dukes learn to manage the disease as an adult.
When he turned 18, Dukes transitioned to adult care through Methodist, following a pathway built specifically for patients like him. St. Jude, Methodist Healthcare, and Regional One Health operate a joint sickle cell transition clinic in Memphis designed to guide patients through that shift, according to St. Jude. The University of Tennessee Health Science Center's Center for Sickle Cell Disease, working alongside the Methodist Comprehensive Sickle Cell Center, serves as the largest care provider for adult sickle cell patients in Tennessee, per the One SCD Voice directory.
Support Beyond the Clinic
Medical care is not the only support available to students whose sickle cell disease affects attendance or participation. According to Tennessee Department of Education guidance, students whose health conditions substantially affect daily functioning may receive accommodations under Section 504 even when they do not qualify for special education services. The Memphis transition partnership is designed to provide more than a change of doctors. According to St. Jude Children's Research Hospital, the St. Jude-Methodist-Regional One Sickle Cell Disease Transition Clinic helps patients prepare for adult care through education, planning, adult-center tours, appointment coordination and medical-record transfer. In a 2017 account, Methodist Le Bonheur Healthcare said the adult center's team had grown from five to 11 members since August 2016, adding clinical and support roles.
From Stax Trombone to a Nonprofit for Kids
Before founding his nonprofit, Dukes attended Craigmont High School in the Raleigh neighborhood and spent four years studying music at the Stax Music Academy, where he played trombone in its jazz and rhythm ensembles, according to the Arts Over Odds Foundation. That musical background eventually shaped the organization he built.
In 2023, Dukes founded the Arts Over Odds Foundation, a nonprofit that provides arts opportunities for children and young adults living with health conditions and disorders. Last September, the foundation hosted its Arts For All Benefit Concert at Playhouse on the Square in Memphis, supporting St. Jude Children's Research Hospital and funding arts education for youth facing chronic health conditions, according to a Givebutter event listing. Dukes wants young people with sickle cell and other conditions to see that a diagnosis need not define their future.
A Shifting Medical Horizon
The broader landscape for sickle cell treatment has begun to change. In December 2023, the U.S. Food and Drug Administration approved Casgevy and Lyfgenia as the first cell-based gene therapies for sickle cell disease in patients 12 and older, with Casgevy marking the first FDA-approved treatment to use CRISPR gene editing, according to the U.S. Food and Drug Administration. The life expectancy gap remains stark in the meantime: the Centers for Disease Control and Prevention estimates that people living with sickle cell disease in the United States live more than 20 years shorter than the national average, a disease that affects roughly 100,000 Americans.
The toll extends beyond the hospital and into the classroom. A 2025 statewide study led by St. Jude and University of Memphis researchers found that Tennessee high school students with sickle cell disease faced significantly higher absenteeism and reduced odds of academic proficiency compared to peers without the disorder, according to findings published in Pediatric Blood & Cancer. For Dukes, that mix of physical pain, missed milestones, and educational disruption is exactly what he hopes to change for the next generation — one benefit concert, and one conversation, at a time.
