It is with profound sadness that we announce the loss of our dear colleague, Dr. Kwaku Ohene-Frempong, affectionately called “KOF,” who passed away peacefully at home on Saturday, May 7, 2022.

KOF was professor emeritus of pediatrics at the University of Pennsylvania and director emeritus of the Children's Hospital of Philadelphia (CHOP) Comprehensive Sickle Cell Center. A native son of Ghana, he attended Yale University for his undergraduate and medical education and completed his residency in pediatrics at New York Hospital and fellowship in pediatric hematology-oncology at CHOP. His first faculty position was at Tulane University School of Medicine where he established the Sickle Cell Center of Southern Louisiana and became its inaugural medical director. KOF returned to CHOP in 1986 and was named the director of the Sickle Cell Program in the division of hematology. During his tenure, he oversaw one of the largest and most comprehensive pediatric programs in the United States, staffed by dedicated hematologists, nurses, social workers, education specialists, clinical research coordinators, and psychologists.

Dr. Ohene-Frempong was a leader in the decades-long Cooperative Study of Sickle Cell Disease, which established the natural history of many sickle cell disease (SCD) complications as well as the basis for many of the evidence-informed guidelines still used today. The Comprehensive Sickle Cell Program at CHOP flourished under his leadership. KOF also led the CHOP/Penn Consortium through 18 years of continuous National Heart, Lung, and Blood Institute (NHLBI) funding as one of the 10 competitively renewed Comprehensive Sickle Cell Centers in the United States. The grant included an exploratory pilot aimed at examining the feasibility of newborn screening for SCD in Kumasi, Ghana — the first in sub-Saharan Africa — which has become the model for laboratory-based screening and has enabled early intervention for newborns in many countries, saving countless lives. Ghanaian laboratory staff were trained in Philadelphia and returned to Ghana to launch the most successful sustained initiative to identify and treat newborns with SCD in sub-Saharan Africa. KOF was instrumental in supporting colleagues in Brazil, the Middle East, and India to establish SCD treatment centers. His legacy lives on in current international consortia such as SickleInAfrica and the ASH Consortium for Newborn Screening in Africa (CONSA).

Dr. Ohene-Frempong has received numerous awards and acknowledgements to mark his many accomplishments. These include the George H.W. Bush Lifetime of Leadership Award from Yale University (where notably, he was a standout athlete in track and field). In Ghana, he was inducted into the Order of the Volta by the country's president in 2010 for his work in advancing the diagnosis and treatment of newborns with SCD, and in 2015, he received the Millennium Excellence Award in Medicine. In 2020, he became the first civilian recipient of the United States Assistant Secretary of Health Exceptional Service Award for exceptional achievement to the cause of public health and medicine. KOF was recognized by ASH in 2021 with the Henry M. Stratton Medal for his lifetime achievement in clinical and translational hematology research. His scientific contributions were published in the most renowned journals.

KOF was one of a kind. He was a fierce and tireless champion for people living with SCD, ever determined to improve the lives of these individuals and their families through research, advocacy, and education. KOF served as chief medical officer and later chairman of the board of directors for the Sickle Cell Disease Association of America. He also served as chair for the NHLBI SCD Advisory Committee. He was a founding member of the Global Sickle Cell Disease Network and was the founder and president of the Sickle Cell Foundation of Ghana.

KOF often expressed that he was privileged to care for every one of his patients and their families. He never lost his sense of humor and wit, even in the darkest of times. His legacy remains in the progress we have made in SCD care, but also in the work that is ongoing.

The loss of Dr. Ohene-Frempong is immense for the SCD community and is felt beyond those with a connection to ASH. He has been an inspiration and mentor to many doctors and researchers across this nation and around the world who have dedicated their careers to SCD. KOF implored all of us to continue in this work as we strive to improve health outcomes and quality of life for individuals living with SCD. KOF was a trusted colleague, known for his warmth and kindness. He was a loving husband, father, and grandfather. He was beloved by many and will be missed tremendously.