About Us

Mission

SGIF strives to save lives and eliminate the extreme pain and suffering that millions of people around the world with sickle cell disease experience by supporting high-quality screening, medical treatment, psychosocial support, research for improved treatments and a  cure.

Vision

We envision a world in which effective treatments and cures for sickle cell disease are widely available and accessible to people in low and lower middle-income countries that have a high burden of sickle cell disease. Inspired and motivated by the accomplishments of the late Professor Kwaku Ohene-Frempong, MD through his decades of work to improve the lives of those living with sickle cell disease in the United States, Ghana, and around the globe, the Sickle Gene International Foundation (SGIF) aims to continue and expand Dr. Ohene-Frempong’s vision to:

  • identify those with sickle cell disease early in life
  • provide services for preventing infections, strokes, and pain
  • increase overall survival rates for sickle cell d
  • improve quality of life for those living with SCD

Our Founder

Kwaku Ohene-Frempong, MD

His newborn son diagnosed with sickle cell disease – May 1972

A Father on a Mission (1972-2022)
Dr. Kwaku Ohene-Frempong, Founder of Sickle Gene International Foundation, envisioned a world where no child or adult would suffer or die from sickle cell disease. After his eldest child was born with SCD, Dr. Ohene-Frempong dedicated his career and life to making that vision come to pass in the United States and around the world.

From advocating for newborn screening in the United States and worldwide, to training clinicians in appropriate care for children and adults with sickle cell disease, Dr. Ohene-Frempong dedicated himself personally and professionally to ensure that those living with sickle cell disease would thrive and live well into old age and that sickle cell disease would eventually be eradicated.

The Sickle Gene International Foundation supports Dr. Ohene-Frempong’s vision of establishing a Center of Excellence with global reach, bringing together best practices from around the world to best serve those affected by sickle cell disease worldwide.

KOF’s many titles included doctor, professor, researcher, director, and advocate; but his most beloved titles were father, uncle, brother, husband and friend.  For every patient became his child and he a forever father and friend to the thousands of children and young adults that he treated. He valued the dignity of “his children” above all else and became their partner, sometimes lifelong, in their daily struggle with sickle cell disease.  In his last days he continued to care for and advocate for the health of his patients.  A man who lived his calling until the very end.

Accomplishments and their impactKOF 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.

KOF exemplified a true servant leader. He led and established many initiatives, programs, and trained numerous clinicians including physicians, nurses, social workers, community health workers, and technologists, all with the goal of always providing the best care for his patients.   A few of KOF’s accomplishments include

  • Establishing the Southern Louisiana Sickle Cell Center-Tulane University;
  • helping to establish the Northern Louisiana Sickle Cell Center-Louisiana State University, providing technical advice to the Louisiana Health Department for the development of newborn screening for sickle cell disease.
  • Starting “Camp-Free-To-Be-Me” for campers ages 7-14 with sickle cell disease from CHOP and St. Christopher’s Hospital for Children (St. Chris) to have a safe and fun camping experience.
  • Starting the Hematology Acute Care Unit at Children’s Hospital of Philadelphia where children and young adults with acute illness could be seen and treated urgently by a healthcare team with sickle cell expertise.

Academic Credentials –In his over 45-year career KOF held many academic and hospital/ administrative appointments most recently serving as Professor Emeritus of Pediatrics, University of Pennsylvania and Philadelphia and Director Emeritus, Comprehensive Sickle Cell Center, The Children’s Hospital of Philadelphia, Philadelphia.

Evidence-based approach with demonstration and implementation grants – Throughout his long research career KOF was awarded many grants to further the understanding and provision of care for sickle cell disease.  Notably he was awarded the following:

  • National Institutes of Health 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.

Foundation leadership, In 2004, KOF and other concerned people in Ghana established the Sickle Cell Foundation of Ghana to support the development of resources and services to improve the health and quality of life of people with Sickle Cell Disease and its related Conditions. Prior to his passing in 2022, KOF also established Sickle Gene International Foundation, a US-based charity to support sickle cell disease advocacy, education, research and treatment around the globe

Awareness and Advocacy.  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.

An early vision for a center of excellence

Newborn screening, clinical care guidelines, advocacy, hydroxyurea, innovations, 

international partnershipsAs sickle cell disease is a global phenomenon affecting those living in North America, South America, Africa, Asia, and Europe, KOF formed many partnerships worldwide with clinicians, governments, corporations, advocacy groups and families to advance the care of those living with sickle cell disease.  Some of these partnerships included his work with sickle cell disease health care providers and advocates in Brazil.  He worked with Dr. Isaac Odame and others to establish the Global Sickle Cell Disease Network and what is now the Worldwide Sickle Cell Disease Coalition.

KOF’s contributions and impact on sickle cell disease worldwide are immense and unmatched his legacy and life work are detailed here.

“Dr Frempong”, “Prof”, “Kof (KOF)” 

  1. The Sickle Cell Road KOF Paved in Ghana and Beyond (1992-2022)
  • The Sickle Cell Foundation of Ghana 
  • Partnership with Patients and Families
  • A Ghana-Based Center of Excellence
  • Early Detection of SCD 
  • Disease Modifying Therapies 
  • Stroke Prevention 
  • Innovations in Data Management
  • International Partnerships

KOF’s contributions and impact on sickle cell disease worldwide are immense and unmatched his legacy and life work is detailed here.

Our Board Members

Co-Founders and Executive Officers 

Our Strategic Partners

  • Pfizer?
  • Worldwide Sickle Cell Coalition