Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service to honor his life has been planned for Saturday, June 25, in Accra, Ghana. The memorial will be livestreamed for the hundreds of community members who will be unable to attend the live event in Accra. Please click here to register.

A website has also been created to commemorate Dr. Ohene-Frempong’s memory. Click here to visit the site and learn more about the outstanding impact he had on so many lives.  

The Sickle Cell Disease Association of America named Reginald Hart Jr. as chief financial officer. Hart brings more than 20 years of experience in executive leadership, business management, strategic planning, financial operations, contracting and cost control.

Prior to joining the Sickle Cell Disease Association of America, Hart managed business finance and operations for AARP’s Legal Counsel for the Elderly, where he handled strategic and transactional financial responsibilities including the development of the annual budget, quarterly forecasts and multiyear financial plans. Hart also helped develop and implement the organization’s strategic plan.

Previously, Hart was CFO of the National Association of Housing and Redevelopment Officials. Hart oversaw all finance and accounting operations, leading a team of accounting, operations, conference planning, policy and human resources professionals. He also held the position of budget director for the association.

In addition, Hart held financial management positions with Tonya Management and Technology Consulting, including manager of contracts and finance, senior budget analyst and contract administrator. He has provided business consulting in organizational development, project management, financial systems analysis, design and implementation and contract management.

Hart belongs to the American Society of Association Executives and serves as a board member and mentor at the YMCA. He holds an MBA from the University of Maryland Global Campus and a bachelor’s degree in economics from the University of the District of Columbia.  

We are devastated to learn of the death of Dr. Kwaku Ohene-Frempong on Saturday, May 7, 2022. Dr. Ohene-Frempong was a true leader in the sickle cell community and dedicated his life and career to working with SCD. He held many roles on the Sickle Cell Disease Association of America board of directors over the years, including chief medical officer, board chair and board member emeritus. He also sat on the SCDAA Medical and Research Advisory Committee. His presence will be sorely missed in our organization and in the community at large.

Dr. Ohene-Frempong was born in Ghana, and his record of excellence as a student-athlete earned him a scholarship to Yale to study pre-med and later, a trip to the Olympics representing Ghana in track and field. He received his medical degree from the Yale School of Medicine in 1975. While finishing his degree, his son became the first baby diagnosed with sickle cell disease by Dr. Howard Pearson in the pioneering newborn screening program at Yale in 1972. His firsthand experience with sickle cell and newborn testing motivated him to dedicate his life and career to studying and advocating for sickle cell.

In the United States and all over the world, Dr. Ohene-Frempong was a leading pediatric sickle cell physician. He was director emeritus of the Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia, emeritus professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and president of the Sickle Cell Foundation of Ghana.

His landmark analysis of stroke in the Cooperative Study of Sickle Cell Disease showed the high rates of stroke in children from blocked blood flow and high rates of stroke in adults that were from bleeding aneurysms. He also pioneered a newborn screening and follow-up program in Kumasi, Ghana, where one in 50 babies have sickle cell disease. It has been a beacon and training center for sickle cell care and research in Africa. Dr. Ohene-Frempong founded the Sickle Cell Foundation of Ghana and was a founding member of the Global Sickle Cell Disease Network.

To learn more about Dr. Ohene-Frempong’s outstanding life, we encourage you to listen to this podcast episode about his story.

We will greatly miss Dr. Ohene-Frempong’s dedication, passion and intelligence. We will share more information about services as they are announced. Our sincerest condolences go out to his friends and family. 

The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition.

“SCDAA is excited to again partner with the Phi Beta Sigma Fraternity, and we are honored to have been chosen as a recipient of their donations,” said Regina Hartfield, president and CEO of SCDAA. “Phi Beta Sigma is deeply committed to serving and supporting the community, as is SCDAA. Their support will go far to benefit those living with sickle cell disease.”

The partnership will support the SCDAA and sickle cell community through raising funds, mobilizing blood and bone marrow drives and collaborating to educate the community about sickle cell disease and sickle cell trait. Phi Beta Sigma Fraternity will encourage chapters to collaborate with their local American Red Cross to host blood drives and the Be The Match Registry to host bone marrow drives. Chapters will conduct screenings to help adolescents and adults detect sickle cell and organize fundraisers for sickle cell research, education and children’s services.

“SCDAA is proud to continue its partnership with Phi Beta Sigma in raising awareness about sickle cell disease,” said Thomas L. Johnson, chair of the SCDAA board of directors. “Its dedication to the mission of SCDAA is exemplary of providing support and assistance for those in need.”

Phi Beta Sigma Fraternity was founded at Howard University in Washington, D.C., in 1914 to exemplify the ideals of brotherhood scholarship and deliver services to the general community. The fraternity’s motto is “Culture for Service and Service for Humanity.”

“This disease effects one out of every 365 Black or African-American births and one out of every 16,300 Hispanic-American births,” said Chris Rey, president of the fraternity. “Phi Beta Sigma is dedicated to doing all we can to change these grim numbers. We are excited to continue our partnership with SCDAA to continue to fight for a cure.”  

Meet Paul Williams, one of the founding members of the legendary Motown group The Temptations. Williams began singing as a kid with Eddie Kendricks in their church choir in Birmingham, Alabama. The two pursued music careers as members of various groups, eventually moving to Detroit to join Otis Williams, Melvin Franklin and Elbridge Bryant as The Temptations.

With Williams on board, the group released many hits, including “My Girl.” Williams was considered the best dancer in the group and choreographed many of their moves. He also served as the original choreographer for The Supremes. His battle as a sickle cell warrior was hidden from the public, and his health issues eventually caused him to leave the group. Williams’ indelible impact helped cement The Temptations’ place in history as one of the greatest vocal groups in modern times and trailblazers in the evolution of R&B and soul music.

Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. 

Meet Billy Garrett Jr., the first known person with sickle cell disease to play in the NBA. Billy grew up in Chicago, playing competitive basketball despite words of caution from his doctors. To keep playing, Garrett learned to balance hydration, rest and exertion through a process of trial and error that would occasionally lead to crises. His passion and dedication carried him through these obstacles and onto the court as a member of the DePaul Blue Demons, the New York Knicks and the Lakeland Magic. Off the court, we’re honored to have him on our team as one of our celebrity ambassadors. Hear his story and how he learned to play despite the pain.

Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. 

We kick off our celebration recognizing world-renowned jazz artist Miles Davis. He struggled with health issues – arthritis, hip-joint problems and pneumonia – but wasn’t diagnosed with sickle cell disease until middle age. He began playing the trumpet at age 13 and at 18 convinced his parents to allow him to move to New York City to study at the prestigious Juilliard School. It was a ploy so he could jam with the musical masters of his day and join the band of his idol, Charlie Parker. He was soon leading his own projects and bands, solidifying a career that spanned decades. His album “Kind of Blue” is one of the most successful and influential jazz albums in history. He passed away in 1991, but his music lives on. Take some time to listen to his music today and pay tribute to this influential sickle cell warrior.

Thank you to bluebird bio for their generous support of our 49th Annual National Convention!

How can you help to spark change in Sickle Cell Disease (SCD)? By staying proactive in sickle cell care and planning for the future. Be the Spark, a platform for education and information brought to you by bluebird bio, was created in collaboration with advocacy organizations to drive change in sickle cell. bluebird bio believes that achieving change in sickle cell starts with listening, making no assumptions, and amplifying the voices of people who are already working tirelessly to make a difference. bluebird bio is committed to supporting the sickle cell community and strives every day to help sickle cell gain the recognition it deserves. Visit SparkSickleCellChange.com to build on your sickle cell knowledge and learn how you can spark the conversation for change!

This information and the content on SparkSickleCellChange.com is not intended to replace discussions with your healthcare provider. Please discuss any questions with a US healthcare professional.

Learn more about bluebird bio at: www.bluebirdbio.com