Tag Archives: In Memory

In Memory of Genesis Jones

The Sickle Cell Disease Association of America, Inc. (SCDAA) was deeply saddened to hear of the recent loss of Genesis Jones, a dedicated warrior and sickle cell advocate. An active and influential member of our community, we were honored to have her join us in June as a panelist during the joint SCDAA/NHLBI community forum “Research that Heals: Partnering with Patients to Transform SCD Care.” Her powerful testimony served as a tribute to her resilience, dedication and strength, and her memory will live on in our hearts.

Genesis was a dynamic advocate and speaker who was passionate about supporting individuals with rare conditions. She was a bone marrow transplant survivor and had recently earned a Master of Education in clinical mental health counseling. As a published author and public speaker, Genesis shared her story across national stages. She collaborated with many leading organizations including SCDAA, NMDP, National Institutes of Health, Foundation for Sickle Cell Disease Research and the Rare Disease Diversity Coalition to raise awareness, influence policy and develop resources that center the voices of survivors. In addition, she founded the nonprofit Rare Resilience Alliance dedicated to empowering individuals living with rare diseases — especially those navigating sickle cell and transplant journeys. Her work made a lasting impact on the sickle cell disease space and helped pave the way for progress.

SCDAA extends our heartfelt condolences to Genesis’s family and friends on their untimely loss. A memorial service will be held on August 22 in Arlington, Texas. To learn more about Genesis’s outstanding life, view details about services and/or give in her memory, visit: https://www.wadefamilyfuneralhome.com/obituaries/genesis-jones

In Memory of James E. Rawlings


With great sadness, SCDAA shares the news of the passing of James E. Rawlings, president and CEO of Michelle’s House (SCDAA, CT), on Sunday, May 25. In addition to leading one of our oldest member organizations, Mr. Rawlings was a past SCDAA National board member and served as treasurer from 2004-2007. In a statement, Michelle’s House said:

“For over 30 years, Mr. Rawlings was a towering figure in the fight against sickle cell disease and a steadfast advocate in the broader public health landscape. His unwavering dedication, passion and advocacy were rooted in a profound commitment to breaking through more than a century of neglect and stagnation surrounding sickle cell disease, particularly as it affects Black and Brown communities.

Mr. Rawlings championed the voices of the underserved and unrecognized. His tireless efforts, his leadership and his fierce compassion have left an indelible mark not only on our organization but also on the lives of countless individuals and families.

This is an immeasurable loss — not only for the sickle cell community, but for all who had the honor of knowing and working alongside him. We extend our deepest condolences, prayers, and well-wishes to the Rawlings family during this difficult time.

May his legacy of justice, equity and compassion continue to inspire us all.”

Services will be held on Wednesday, June 4, at Christ Church in New Haven, Connecticut (Viewing 10 a.m. – 12 p.m. ET, service at 12:15 p.m. ET). SCDAA sends our sincere condolences to Mr. Rawlings’ family, friends and colleagues as we mourn this tremendous loss.

In Memory of Dr. Winfred Wang


SCDAA mourns the loss of prominent pediatric hematologist and sickle cell provider Dr. Winfred Wang, who passed away on April 9 at the age of 82. Dr. Wang practiced at St. Jude Children’s Research Hospital in Memphis, Tennessee. He helped to pioneer the use of hydroxyurea for children with sickle cell disease through his research, including the 2011 BABY HUG study. “I remember him presenting the BABY HUG data at the American Society of Pediatric Hematology/Oncology conference in 2010,” says Dr. Crawford Strunk, SCDAA vice chief medical officer. “It was like he was giving us our marching orders. He was such a great advocate, clinician and researcher. He will surely be missed.”

SCDAA board member and former chief medical officer Dr. Lewis Hsu added, “He was quiet and humble in his leadership. He and his team were good at developing ways to explain to children and parents what hydroxyurea was doing.”

SCDAA sends our deepest condolences to Dr. Wang’s friends and family. We will remember all that he did for the sickle cell community as we honor his legacy.

In Memory of Dr. Gwendolyn Poles-Corker


With great sadness, SCDAA shares the news of the loss of Dr. Gwendolyn Poles-Corker on April 8, 2025. The 71-year-old was a trailblazing physician, educator, advocate and sickle cell warrior. She passed away from complications of her disease, but she never let it hold her back. She overcame the odds and brought healing and care to her patients and community. Dr. Poles-Corker supported SCDAA’s work and served as a member of the SCDAA Advisory Board until her passing. Her guidance and leadership will be deeply missed.

To read more about Dr. Poles-Corker’s life and legacy, visit the links below.

Trailblazing Harrisburg doctor with sickle cell who fought for patient improvements dies – pennlive.com

Gwendolyn Agnis Poles-Corker Obituary April 8, 2025 – Hooper Memorial Home Inc.

In Memory of Frank Reddick

It is with great sadness that SCDAA shares the news of the passing of Frank Reddick on Dec. 23, 2024. Frank was the president and CEO of the Sickle Cell Disease Association of Florida, an SCDAA member organization headquartered in Tampa. He was a steadfast sickle cell advocate and was the head of the Florida state sickle cell chapters. As a former Tampa city councilman, Frank was a respected leader in his local community. SCDAA sends our sincerest condolences to his family, friends and loved ones. Click here to read more about Frank.

In Memory of Dr. Lennette Benjamin

The Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news of the passing of Dr. Lennette Benjamin. Dr. Benjamin was a trailblazing physician who made many outstanding contributions to the sickle cell community. She was one of the first to establish a “day hospital” as an alternative to the emergency room for pain management – an approach that is today recognized as a best practice in care.  

Prior to her retirement, Dr. Benjamin led the Montefiore Sickle Cell Center for Adults in the Bronx, New York. She was an SCDAA board member emeritus and served on the SCDAA Medical and Research Advisory Committee. 

Dr. Benjamin was also a dedicated advocate and mentor. She made a global impact and raised sickle cell awareness in West Africa, Brazil and beyond. “She was always looking out for others, patients and peers alike,” recalls Dr. Lewis Hsu, SCDAA chief medical officer. “She was full of warm advice and expert guidance.”

Dr. Benjamin passed away in Houston, Texas on Oct. 20 at the age of 82. To share your sympathies, please click here.

SCDAA’s National Office and Board of Directors pay tribute to Dr. Benjamin’s outstanding life and career and send our deepest condolences to her family, friends and loved ones. 

The Passing of Dr. Samir Ballas

SCDAA regrets to announce that Dr. Samir Ballas passed away on August 12. He was devoted to caring for adults with sickle cell in Philadelphia at Thomas Jefferson University. He made many significant contributions to clinical research on sickle cell pain and lab research on sickle cell shape changes. Read the letter from his daughter that describes his deep faith and lifelong commitment to help sickle cell disease here: https://bit.ly/DrBallas. Our thoughts are with his family at this difficult time.

 

Memorial Service for Dr. Kwaku Ohene-Frempong

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.  

In Memory of Dr. Kwaku Ohene-Frempong

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.