Author Archives: Emma Day

Black History Month 2026: Dr. Charles Drew

Our final #SCDHistoryHighlight of 2026 explores the life and career of Dr. Charles Drew, a pioneering physician whose work paved the way for our modern-day blood banking system. Thanks to his research, individuals with sickle cell disease have access to safe and timely blood transfusions.

Dr. Drew was born in 1904 in Washington, D.C. He was a talented athlete and earned a partial scholarship to Amherst College in Massachusetts, where he was one of the few African Americans on campus. After graduating, he taught biology and coached at Morgan College (now Morgan State University) before attending medical school at McGill University in Canada. During his residency at Montreal Hospital, he developed an interest in blood transfusions and their effectiveness in treating shock.

He began his medical career at Howard University, practicing as a faculty instructor for pathology and later taking an appointment at the Freedman’s Hospital as a surgeon. In 1940, he completed his postdoctoral studies at Columbia University and became the first African American to earn a Doctor of Science in Medicine degree.

His postdoctoral thesis, titled “Banked Blood: A Study on Blood Preservation,” determined how to process and preserve blood plasma — a strategy that increased the length of time that blood could be stored. This research was completed in time to be of great use during World War II, and Dr. Drew led efforts to collect, preserve and internationally ship approximately 14,500 liters of blood through the Blood for Britain campaign.

In 1941, Dr. Drew was appointed assistant director of the first American Red Cross Blood Bank. During his time with the organization, he invented the “bloodmobile,” which allowed blood to be collected and transported on-the-go. Dr. Drew strongly objected to the blood bank segregating their blood storage and ultimately resigned from his position in protest of this racist policy.

Dr. Drew went on to rejoin faculty at Howard University, where he worked until he tragically passed away in a car accident at the age of 45. Dr. Drew’s research lay the foundation for safe and accessible blood transfusions, and his advocacy promoted equity in medicine — key elements of wellness for individuals with sickle cell disease across the globe.

Black History Month 2026: Dr. Marilyn Hughes Gaston

This week, meet Dr. Marilyn Hughes Gaston, whose dedication and passion for health care led her to pave the way for equity. Dr. Gaston’s special focus on sickle cell disease helped shape our understanding of the condition and its management.

Born in 1939, Dr. Gaston’s family faced poverty and discrimination, but she knew by age nine that she wanted to become a physician. When she was a teenager, her mother became ill with what would later be diagnosed as cervical cancer. The family had no health insurance and faced other barriers to access, which meant Dr. Gaston’s mother was not properly treated. After witnessing her mother collapse in their living room due to the lack of care, Dr. Gaston resolved to overcome the odds and pursue a career in medicine.

Dr. Gaston earned an undergraduate degree at the University of Miami before enrolling in the University of Cincinnati College of Medicine, where she was the only Black woman in her class. She became interested in sickle cell disease during her internship at Philadelphia General Hospital in 1964. According to Changing the Face of Medicine, “one evening, during her internship, Dr. Gaston admitted a baby with a badly swollen hand. No trauma was reported, and she could not find the cause of the swelling. Her supervising resident suggested she check the blood work for evidence of sickle cell disease. The child did have SCD, and his hand was swollen from infection. Gaston was appalled that she hadn’t even considered checking for this condition and set out to learn everything she could about it.”

Dr. Gaston dutifully began her studies of sickle cell disease, securing federal grants and establishing herself as a leading expert in the condition. In 1986, she published her landmark research on penicillin prophylaxis. Her national study determined that giving children with SCD preventative penicillin from birth reduced the complications of sickle cell disease. Her work indicated that newborn screening was key to identifying SCD early and treating it properly. Newborn screening now identifies many conditions beyond sickle cell and is standard practice in U.S. public health.

In addition to her groundbreaking work in the sickle cell space, Dr. Gaston spent many years as a medical expert with the National Institutes of Health and went on to become the director of the Bureau of Primary Health Care in the U.S. Health Resources and Services Administration. She was the first Black woman to direct a public health service bureau in the country. Her dedication to improving health care for poor and underserved families has left a lasting mark on history. Thank you, Dr. Gaston, for your commitment to our community.

Black History Month 2026: Dr. Roland Scott

Our next #SCDHistoryHighlight shines a light on the life and legacy of the “father of sickle cell disease” – Dr. Roland B. Scott. Dr. Scott’s groundbreaking research and dedication to patients during a time of intense discrimination paved the way for progress in SCD treatment.

Dr. Scott was born in 1909 and graduated with his medical degree from Howard University in 1934. He spent the majority of his career in the pediatrics department of Howard University. During this time, he began to notice the high number of African American children in the emergency room experiencing sickle cell symptoms and complications.

Dr. Scott was a trained allergist, but he switched his focus to help improve treatment for this misunderstood disease. A compassionate pediatrician, Dr. Scott held office hours in the evenings during which he would see African American children and families who were discriminated against and denied access to medical treatment.

Dr. Scott would go on to publish hundreds of articles on sickle cell disease during his time at Howard University. Although he did not specialize in hematology, in 1948 Dr. Scott published a paper on the sickling of red blood cells in newborns. This paper established a better understanding of sickle cell disease and laid the groundwork for newborn screening as we know it today.

In addition to being a dedicated researcher, Dr. Scott was a fierce advocate for sickle cell disease. His advocacy played a large role in the federal government’s passing of the Sickle Cell Anemia Control Act of 1971, which ensured nationwide funding for SCD research and treatment.

In 1972, Dr. Scott founded the Howard University Center for Sickle Cell Disease, which continues to conduct research and provide care to sickle cell patients today. He passed away in 2002. Dr. Scott’s work and advocacy changed the landscape for sickle cell disease, and we owe so much of our capability to treat and understand sickle cell to his efforts.

Black History Month 2026: Dr. Angella Ferguson

Our first 2025 Black History Month #SCDHistoryHighlight features Dr. Angella D. Ferguson, a pediatrician and SCD pioneer who recently passed away at the age of 100.

Dr. Ferguson was born in 1925 and received her bachelor’s and medical degrees from Howard University. After graduation, she began work as a medical researcher at Howard University’s School of Medicine, where she aimed to gather data correlating the height and weight of children with age.

While completing this research, she discovered that a large number of African American children suffered from sickle cell disease, which, at the time, was a fairly unknown condition. She changed gears and committed her time to understanding how the disease presents itself in children. In doing so, she became one of the first researchers to dedicate her studies to sickle cell.

Dr. Ferguson’s research had lasting impacts on how sickle cell is diagnosed and treated. She developed a blood test to diagnose the disease in infants, and her test is the standard in most states to this day. Thanks to her research, we better understand which symptoms to look for in children and can start treating sickle cell earlier.

Dr. Ferguson passed away on January 6, 2026. We send our condolences to her family and friends and extend our deepest appreciation for her steadfast commitment to our community.

Congress Passes Government Funding Bill with Big Wins for the SCD Community

Feb. 3, 2025 – Today, the House of Representatives passed a package of bills providing funding for government programs for fiscal year (FY) 2026, which runs through September 30, 2026. The President is expected to quickly sign the bill into law. All three federal sickle cell disease programs were maintained with the same funding levels as years prior. This includes:

    • $8.205 million for the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program
    • $7 million for HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program
    • $6 million for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program

The package also included other SCDAA priorities:

    • The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 1796/S. 735) which reauthorizes the HRSA SCD Treatment Demonstration Program for another five years. SCDAA has been working to advance this legislation since it was introduced in the 118th Congress – thank you to all who have advocated for this legislation and a special thanks to our Congressional champions – Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives John James (R-MI-10), Danny Davis (D-IL-07), Jen Kiggans (R-VA-2), Troy Carter (D-LA-2) and Marc Veasy (D-TX-33) for helping to get this bill across the finish line.
    • The Accelerating Kids’ Access to Care Act (H.R. 1509/S. 752) which creates a process by which to streamline access to out-of-state care for children with medically complex conditions, including sickle cell disease, insured by Medicaid or the Children’s Health Insurance Program (CHIP). This legislation was championed by Senators Chuck Grassley (R-IA) and Michael Bennet (D-CO) and Representatives Trahan (D-MA-3) and Miller-Meeks (R-IA-1).

    SCDAA would like to thank the many members of the sickle cell disease community who have engaged with Congress on these bills — we could not have done this without you! We are looking forward to more advocacy in 2026.

MARAC Statement: L-glutamine is an Effective Therapy for SCD

Feb. 3, 2026 – The Sickle Cell Disease Association of America, Inc. (SCDAA) Medical and Research Advisory Committee (MARAC) has identified l-glutamine as an effective therapy for sickle cell disease (SCD). MARAC recommends that those living with sickle cell disease discuss l-glutamine as a potential treatment with their providers.

In July 2017, Endari™, an oral powder form of l-glutamine, was approved by the FDA to reduce the acute complications of sickle cell disease in adult and pediatric patients aged five years and older. As a therapy, and at the correct dosage, l-glutamine has been shown to have a positive impact on sickle cell warriors and offer many health benefits. After the patent for Endari™ expired in 2024, the FDA approved generic forms of l-glutamine for the treatment of SCD. L-glutamine was also made available as a supplement for purchase as an over-the-counter product.

Although it is now readily available at health and nutrition stores and other retail locations, it is important to note that not all l-glutamine supplements are formulated to treat the complications of sickle cell disease. While MARAC and SCDAA agree that Endari™ and the generic forms of l-glutamine specifically formulated to treat sickle cell disease are a very effective therapy for sickle cell disease, warriors should not start a new therapy without guidance from a health care provider. We encourage individuals with sickle cell disease to discuss the use of l-glutamine with their sickle cell health care expert.

Additionally, those living with sickle cell disease who choose to take l-glutamine for treatment of SCD are recommended to continue to see their sickle cell health care provider at least once a year.

Download this statement.

SCDAA names Folk-Nagua to board

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Krystal Folk-Nagua to the association’s board of directors. Folk-Nagua brings experience as a social work leader, advocate and individual living with sickle cell disease. 

She serves as senior director of programs at Girls for Gender Equity in Brooklyn, New York, where she leads initiatives that merge healing justice, abolitionist social work and youth leadership. In addition, she recruits, trains and supervises youth organizers and social work interns. Previously, she directed social work for charter schools in New York City and served as an adolescent and family therapist. 

Folk-Nagua holds a doctorate in clinical social welfare from New York University’s Silver School of Social Work and a Master of Social Work from Columbia University’s School of Social Work. She has appeared in publications and delivered lectures and trainings. She holds a Bachelor of Social Work from the University of Albany, The State University of New York. 

Thomas L. Johnson continues as the Sickle Cell Disease Association of America Inc. board chair. Adeyinka Ogunlegan was named board vice chair; Ed Flowers was named secretary and Kenneth Thorpe was named treasurer.