Life Story
Early Childhood and Family
1946 - 1959
Kwaku Ohene-Frempong, the youngest of seven children, was born on March 13, 1946, in Kukurantumi in the Eastern Region of Ghana, to Kwasi Addae Ohene and Adwoa Odi Boafo. His father was a cocoa farmer and a prominent member of the royal family. His mother, a trader, was beloved and a highly regarded member of the community and of the Presbyterian church.
His grandfather, Baffour Kofi Dokyi, was the Chief of Kukurantumi, he had eight wives and forty-four children. As a result, Kwaku grew up surrounded by many disciplinarians, but loving, elders, as well as a host of cousins.
Their ancestral home was known and continues to be known as, Abenase (AH-ben-AH-see). His large family have referred to themselves, over the generations, as Abenasefo, or individuals who trace their roots to Abenase.
Kwaku, affectionately know as “Owuraku” by his mother, attended Kukurantumi Presbyterian Elementary and Middle School, a school that had been established by his grandfather, the Chief. He excelled as an elementary school student and, as the youngest of seven, he benefitted from the guidance and the love of his older brothers and sisters who became teachers, an engineer, a farmer, and a doctor.
Parents, Siblings, with Kwaku on front row left
A Young Kwaku Ohene-Frempong
2.
Secondary School - Prempeh College
1959 - 1966
Kwaku, by then often known as “KOF” (short for Kwaku Ohene-Frempong), had his secondary school education at Prempeh College a prestigious preparatory boarding school in Kumasi, Ghana.
It was at Prempeh that he began his career as an athlete, and was a national champion in high hurdles, long jump, and triple jump.
A top student, he completed his “Ordinary and Advanced-Level "secondary school studies in science in 1966 and served as Senior Prefect of his 1966 graduating class.
The graduates of Prempeh College proudly refer to themselves as Amanfoo.
Ohene-Frempong jumping high and coming in first!
A Prempeh Amanfoo taking a break from studies
3.
College - Yale University
1966 - 1970
Towards the end of secondary school, KOF was selected to attend Yale University through the competitive African Scholarship Program of the American Universities.
As an undergraduate at Yale, he was captain of the track and field team. He set both indoor and outdoor records in the high hurdles. He was also a star soccer player.
He also continued to compete for Ghana and in 1970 he set a new Ghana record in the 110m high hurdles. This record was held, until broken at the 1996 Atlanta Olympic Games.
He received his Bachelor of Science degree in Biology in 1970 and, at graduation, was awarded the William Mallory Award for the Best Scholar Athlete at Yale.
Star Soccer Player
Serious Student - His Priority
Record Holding Hurdler
Top Scholar & Athlete
4.
Meeting and Marrying Janet
1970
While an undergraduate at Yale, KOF met Janet Williams, who was attending Cornell University.
They both graduated from their respective universities on June 6, 1970 and got married one week later on Saturday, June 13, 1970.
Getting to Know Each Other Early Spring 1970
Wedding Day
June 13, 1970
5.
Yale Medical School and the Birth of Kwame
A Baby Boy. Sickle Cell Disease. A New Direction.
1970 - 1975
KOF entered Yale Medical School in the fall of 1970 with the goal of establishing a career in medicine while in the United States. Ultimately, his desire was to return home and apply these skills to those in need.
On Saturday, May 13, 1972, KOF and Janet welcomed the birth of their first child – an adorable little son, Kwame. A few days later, KOF received the results of a newborn screening test that indicated that his baby boy had sickle cell disease, a genetic disease with possible life-threatening complications.
He shared Kwame’s diagnosis with his wife. He and Janet, then, shared with their families. Upon receipt of this news, KOF’s mother remarked that God was pointing him in the direction that his medical career must take. With Janet’s full support, from that point onward, KOF embarked on a lifelong journey dedicated to treating hundreds of children and adults born with sickle cell disease.
In 1975, he graduated from Yale Medical School with complete clarity as to what his career path should be.
He knew the joy and the pain of being the parent of child with sickle cell disease
His mother, Mama Adwobi, said “God is telling you what to do as a doctor”
6.
Residency, Fellowship, and the Birth of Afia
A Baby Girl. Sickle Cell Trait. A Sister for Kwame.
1975 - 1980
Now, on the road to becoming the pediatric hematologist he had decided to be, KOF’s next step after medical school was to do a two-year residency in pediatrics at the New York Hospital/Weill Cornell Medical Center and a three-year fellowship in hematology at the Children’s Hospital of Philadelphia.
In the meantime, KOF and Janet felt that Kwame needed a sister or a brother to navigate life with. On Friday, December 23, 1977, they welcomed their daughter, Afia.
Kwame and his sister Afia became fast friends.
Meanwhile, KOF worked hard towards becoming a board-certified pediatric hematologist, now learning about the complexities of managing the medical care of children with sickle cell disease.
Father to a little girl
Afia adored her big brother
7.
Raising a Child with Sickle Cell Disease
The Joy. The Pain. The Blessing.
A Life Made Possible by Research and Good Medical Care
Although KOF spent his life treating children with sickle cell disease and doing research to find better ways to manage it, he never wanted to be his own son’s doctor. He just wanted to be his father. He knew what to look for and what to do to keep Kwame as healthy as possible. But he wanted to focus on raising his son to be a good and responsible person. And, as a doctor to others, he wanted the very same thing for each of his pediatric patients.
Thanks to the hard work and dedication of KOF and other researchers and clinicians around the globe, Kwame and many others have managed to have full, enjoyable, and rewarding lives, despite the challenges of living with sickle cell disease.
Kwame grew up being a wonderful big brother to Afia. He was loved by family and friends alike. He was a normal, active little boy who grew into a man who loved sports, went to the University of Maryland at College Park, and had a career in telecommunications, holding the position of Engineer, Wireless Translations, Network Operations at AT&T. He fell in love, bought a home, had two beautiful children.
Kwame died suddenly from a complication of sickle cell disease on May 1, 2013, days before his 41st birthday. However, because of newborn screening, prophylactic penicillin, hydroxyurea, and specialized hematological care, Kwame lived a full life for 40 years. Which made it possible for his family to not only share the joys of having Kwame in their life, as an adult, but also for KOF and Janet to be given the gift of two wonderful grandchildren.
The fact of the matter is, many people afflicted with sickle cell do not live into their adult years, they die at a much younger age. The ultimate goal is to extend lives and to expand the availability of a cure.
Kwame the Big Brother
A Life Well Lived May 13, 1972 – May 1, 2013
Kwame the Dad
Kwame died suddenly in 2013 after a brief 3-day illness. Had he lived, he would have turned 50 on May 13, 2022, just one week after his father, passed away on May 7, 2022.
From his son Kwame’s birth in 1972 to KOF’s passing in 2022, KOF spent those 50 years of his life dedicated to making life better for people with sickle cell disease all around the globe.
8.
A Pediatric Hematologist and Sickle Cell WARRIOR
1980 - 2022
Working with colleagues fighting to improve and save lives all around the globe
Following the Hematology-Oncology Fellowship at CHOP, KOF spent six years at Tulane University Medical Center in New Orleans, Louisiana, where he established the Southern Louisiana Sickle Cell Center-Tulane University and helped establish the Northern Louisiana Sickle Cell Center-Louisiana State University, in Shreveport.
While at Tulane, he provided technical advice to the Louisiana Health Department for the development of newborn screening for sickle cell disease. He returned to the Children’s Hospital of Philadelphia (CHOP) in 1986 to continue clinical research studies in sickle cell disease.
From 1990 to 2010, KOF directed three five-year cycles of the Comprehensive Sickle Cell Center research program funded by USNational Institutes of Health which included several major research projects. At the University of Pennsylvania, he rose through the academic ranks, attaining Full Professor in 1996.
KOF’s many accomplishments at CHOP included starting the Hematology Acute Care Unit where children and young adults with acute illness could be seen and treated urgently by a healthcare team with sickle cell expertise. He-led many basic science projects to better understand the underlying pathophysiology of sickle cell disease and screen medications that provided beneficial clinical outcomes for sickle cell disease.
Throughout his career, KOF trained numerous clinicians including physicians, nurses, social workers, community health workers, and technologists. Most importantly for KOF, he started “Camp-Free-To-Be-Me” in 1989. This camp brought campers ages 7-14 with sickle cell disease from CHOP and St. Christopher’s Hospital for Children (St. Chris) together for an overnight camp experience. “Camp-Free-To-Be-Me” was staffed by clinical teams from CHOP, St. Chris, and community volunteers. It was important to KOF to provide a safe camping experience focused on fun activities like swimming and building community.
From 1993 to 2008, with grant funding from the NIH, he and collaborators in Ghana developed the first public health program for screening newborns for sickle cell disease in Africa. In 2004, KOF and other concerned people in Ghana established the Sickle CellFoundation of Ghana. Ghana launched its National Newborn Screening Program for Sickle Cell Disease in November 2010.
This pilot program was designed to provide screening for sickle cell disease among newborns in the southern city of Kumasi, Ghana. It was the first such program in sub-Saharan Africa. In addition to identifying children with the illness, the program referred them to specialized clinics that provided treatments like antibiotics to prevent infections, routine immunizations, and a drug, hydroxyurea, that can reduce the risk of complications from sickle cell.
In 2010, KOF was honored by the President of Ghana with the Ghana National Award–Order of the Volta. In 2015, the MillenniumExcellence Foundation of Ghana honored him with the Millennium Excellence Award 2015 for Medicine.
Since January 2017, KOF was the Emeritus Professor of Pediatrics at the University of Pennsylvania, and Director Emeritus of the comprehensive Sickle Cell Center at the Children's Hospital of Philadelphia. He devoted most of his time working with national and international collaborators to continue research and develop sickle cell disease programs in Ghana and other African countries.
In 2020, KOF was awarded the Assistant Secretary of Health (ASH) Exceptional Service Medal for exceptional achievement to the cause of public health and medicine, the highest civilian award from the United States Public Health Service, recognizing him for his outstanding contributions on behalf of the millions of people worldwide suffering from sickle cell disease (SCD). Ohene-Frempongisthe first civilian recipient of the ASH Exceptional Service Medal.
In December 2021, KOF received the American Society of Hematology Henry M. Stratton Award for Translational and clinical science. The Statement with the Medal said: “Dr. Ohene-Frempong, the translational/clinical awardee, is a world leader in the treatment of sickle cell disease (SCD) and has established many of the current practice standards for the treatment of SCD. One of his key research achievements was in observing the frequency of strokes in young children with SCD, which laid the groundwork for subsequent studies to establish transcranial doppler screening for stroke risk assessment in the patient population. Dr. Ohene-Frempong was also instrumental in advancing clinical trials of hydroxyurea therapy in children with SCD, establishing bone marrow transplant as a cure for, and providing evidence for the benefits of transfusion therapy for SCD complications.”
In 2022, KOF was honored by his colleagues and CHOP alumni with the Richard D. Wood Distinguished Alumni Award for his dedication and accomplishments as a physician, professor, and athlete and for his remarkable work and research in sickle cell disease treatment in children.
KOF initiated many programs and campaigns centered on patient and community education, advocacy, and awareness about sickle cell disease locally, regionally, nationally, and globally. At any given time, KOF actively participated, led, or developed organizations to support progress and breakthroughs for individuals with sickle cell disease. Adept as an administrative leader and transformative as a researcher and clinician, KOF understood the importance of advocacy, partnerships, and community in ultimately eliminating sickle cell disease and its associated disparities.
9.
A Devoted Member of a Very Large Family
1946-2022
KOF’s Grandfather, Baffour Kofi Dokyi, Kukurantumi, Ghana Chief - Early 20th Century The forebearer of KOF’s scores of cousins, nieces, and nephews
Kukurantumi Chief, Baffour Kofi Dokyi with 12 of his 43 offspring
Baffour Kofi Dokyi with 6 of his 8 wives
KOF, as one who valued his Ghanaian traditions, worked to restore Abenase, their ancestral home, so that all who descend from Baffour Kofi Dokyi could return there to learn about the history and the genealogy of their family.
KOF & Wife, Janet
KOF & Son, Kwame
KOF & Daughter, Afia
KOF & Grandkids Aya and Yaw
KOF Husband, Father, Grandfather
10.
Beloved Son, Brother, Father, Family Member, Friend, Colleague, Hematologist, and Beloved Sickle Cell WARRIOR
The Measure of a Man
Not, How did he die?
But, How did he live?
Not, What did he gain?
But, What did he give?
Not, What was his station?
But, Had he a heart?
And, How did he play his God - given part?
Not, What was his shrine?
Not, What was his creed?
But, Had he befriended those really in need?
Not, What did the piece in the newspaper say?
But, how many were sorry when he passed away?
Was he ever ready with a word of good cheer,
To bring back a smile, to banish a tear?
These are the units to measure the worth,
Of a man as a man, regardless of birth