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Sickle Gene About

(1946–2022)

OUR INSPIRATION
In Memoriam: Kwaku Ohene-Frempong

A Son of Ghana:
Kwaku Ohene-Frempong, a prominent figure in hematology and a global authority on sickle cell disease (SCD) was born in Kukurantumi, Ghana in 1946 into a very large and loving family.

A Top Student & Athlete:
KOF excelled academically, athletically, and in leadership during his early education in Kukurantumi and in Kumasi at the prestigious Prempeh College Secondary School. His achievements earned him a scholarship to Yale University in 1966, where he graduated with a BSc in Biology in 1970 and later received his MD from Yale University School of Medicine in 1975.

A Father on a Mission:
In 1972, during his second year at Yale University School of Medicine, his firstborn child, his son Kwame, was born with sickle cell disease. From 1972 to 2022, when KOF passed away, he became a Father on Mission. For 50 years he devoted his career to saving lives and reducing preventable pain and suffering for people born with sickle cell disease.

Top Medical Training:
After receiving his medical degree from the Yale School of medicine, KOF completed his pediatric residency at New York Hospital-Cornell Medical Center and a fellowship in pediatric hematology-oncology at the Children's Hospital of Philadelphia (CHOP), one of the top Children’s Hospitals in the U.S.

A Career of Contributions:
In 1980, he began his academic career at Tulane University School of Medicine, where he founded the Sickle Cell Center of Southern Louisiana.
In 1986, he returned to CHOP and became the Director of the Comprehensive Sickle Cell Center in 1988, transforming it into one of the largest pediatric SCD programs in the U.S.
KOF made significant contributions to SCD research, including early studies on Hb S polymerization and erythrocyte sickling.
At Tulane, he demonstrated the benefits of adenotonsillectomy in children with SCD and obstructive sleep apnea syndrome (OSAS).
He also highlighted the association between OSAS and stroke in children with SCD.
As a leader of the Cooperative Study of SCD, KOF reported on the high risk of stroke in SCD, influencing future prevention strategies.
He was pivotal in initiating the first multi-center trial of hydroxyurea therapy in children with SCD (HUG-KIDS) and secured continuous funding for CHOP's Sickle Cell Program for 18 years.

Global Impact:
KOF's efforts extended internationally, particularly in Ghana, where he initiated Africa's first newborn screening for SCD, serving as a model for similar programs in sub-Saharan Africa. Despite the challenges, his work illuminated the pathways necessary for universal newborn screening.
He also assisted in establishing SCD treatment centers globally, including in Brazil, the Middle East, India, and Europe.
In 2016, KOF retired from the University of Pennsylvania to focus on his roles as President of the Sickle Cell Foundation of Ghana and Coordinator of Ghana's National Newborn Screening Program for SCD.
He facilitated a partnership between the Ghana government and Novartis to improve SCD care, leading to the inclusion of hydroxyurea in Ghana's national health insurance scheme in 2022.
He was a founding member of the Global SCD Network, SickleInAfrica Consortium, and the American Society of Hematology Consortium for Newborn Screening in Africa.

A Tireless Advocate:
KOF was a dedicated advocate for SCD patients, inspired by his son who has the disease. He saw his son Kwame in every baby, child, and adult who had been born with sickle cell disease. He served as chief medical officer and later chair of the board of the Sickle Cell Disease Association of America and chaired multiple national advisory committees on SCD. The scores of stories of his unwavering willingness to go out of his way to help individuals who contacted him for advice and direction are testimony to his expertise and his compassion.

Recognition for His Contributions:
His numerous accolades include the William Mallory Award, the George H. W. Bush Lifetime of Leadership Award, induction into Ghana's Order of the Volta, and the United States Assistant Secretary of Health Exceptional Service Award.
The American Society of Hematology awarded him the Henry M. Stratton Medal in 2021 for lifetime achievement in hematology research.

His Kindness and His Humanity:
KOF was admired for his warmth, humility, and dedication. His mentorship and care for patients left a lasting impact. The global SCD community has mourned his loss and has aimed to continue his mission to enhance the care and well-being of those with SCD.

Source:
From those of us who had the honor and the pleasure of knowing KOF and working with him we owe a debt of deep gratitude to Isaac Odame, MD, KOF’s colleague and friend, for his eloquent and moving memorium.

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