By Kay Bennett

Ediomi Utuk-Lowery is a co-founder of Crescent Foundation and also serves as the nonprofit’s chief marketing and communications officer. The focus of her work—and the main mission of the organization—is to advocate for and support people affected by sickle cell disease, as well as their loved ones and caregivers.

Sickle cell disease, an inherited disorder of the red blood cells, affects African Americans at vastly higher rates than people of other ethnicities. About one in 13 African American babies is born with sickle cell trait, the CDC estimates.

As adults living with sickle cell disease, all of Crescent’s cofounders understand the challenges firsthand, and Utuk-Lowery and her colleagues have identified numerous pressing needs in their community. One of their goals is to help younger sickle cell patients navigate the transition from pediatric or adolescent care to the adult care system. This initiative, called Bridging the Gap, uses a compassionate, holistic approach to support 18- to-24-year-olds faced with the daunting prospect of advocating for themselves within a complex health care environment. They need to understand insurance, create and reach wellness goals, and address their health care needs in the workplace. For these young adults, Bridging the Gap is a valuable resource.

A second program, Crescent Cares, provides case management support. Managing a chronic condition can be complicated; to ease the way, the foundation’s community health workers serve as liaisons to help sickle cell patients and their families coordinate their medical and social service needs. They may make home or virtual visits, help with prescription requests, arrange for transportation, and more.

Crescent’s third key initiative—called One Gene, One Life—provides training and education for the next generation of health care practitioners. It was developed as an immersion program to give medical students insight into the daily lives of sickle cell patients. Crescent Foundation members visit genetics classes, health programs, vending events, and other settings to provide info and dispel common myths. They also talk about archaic language used to describe sickle cell disease.

Because sickle cell patients look to their health care teams for compassion, support, and understanding, this unique program aims to show providers how the disease can truly impact patients’ lives every day. Each Crescent advocate becomes a face for sickle cell awareness, and the idea is to arm future physicians with compassion and knowledge about this invisible condition. Utuk-Lowery says the initiative is all about reaching out to “the up-and-coming stars who are going to be caring for us at one point or another.”

The Crescent Foundation has received an outpouring of love and support for its advocacy efforts, Utuk-Lowery notes. But there’s still work to do: From making calls on behalf of a patient or advocating for individuals in the prison system living with sickle cell, Utuk-Lowery says no task is too big or too small for the team to take on.

Want to know more? Go to crescentfoundationscd.org.

Editor’s Note: In commemoration of Black History Month, the American Red Cross is joining organizations across the country to focus on the importance of health and wellness in our Black communities. Throughout February, we’ll be sharing information about our Sickle Cell Initiative, stories from those impacted by sickle disease and ways that community residents can help.