As Black History Month ends, we would like to look to the future for our final #SCDHistoryHighlight at the amazing work organizations across the country are doing to create a safer environment for our community. We’ve seen many landmark decisions and groundbreaking treatments in the more than 50 years since SCDAA’s founding, but one thing has remained true throughout – that our member organizations are.....
Black History Month: National Sickle Cell Anemia Control Act
After our founding, one of SCDAA’s earliest goals was to ensure the National Sickle Cell Anemia Control Act of 1972 was passed. With our early member organizations in tow, Dr. Whitten and the association began to advocate for this landmark piece of legislation. Our #SCDHistoryHighlight this week looks at why this act was so important for moving sickle cell treatment and research forward. During the.....
Black History Month: Our Early Member Organizations
Last week, we learned about the origins of the Sickle Cell Disease Association of America, Inc. (SCDAA) and the vision for a national coordinated approach to addressing sickle cell disease. This week, our #SCDHistoryHighlight draws attention to the important community-based organizations that joined us in our fight and served as our foundation. During the summer of 1971, the vision for SCDAA – National was formed.....
Black History Month 2025: Dr. Charles F. Whitten
Our first #SCDHistoryHighlight for Black History Month brings attention to the life and work of SCDAA co-founder Dr. Charles F. Whitten. Dr. Whitten was a pediatric hematologist whose dedication to supporting the health of sickle cell patients paved the way for advances in screening, education and more. His pioneering work makes him one of the most important figures in sickle cell history......
MARAC Statement: ASH Report on Exercise and SCT Crisis Risk
On January 30, 2025, the American Society of Hematology (ASH) published a report that found no evidence to support that physical activity can cause sudden death for individuals with sickle cell trait (SCT) without rhabdomyolysis (muscle breakdown) or heat injury. The article also found that there is not a high-level of evidence that sickle cell trait causes acute pain crises......
Editas Medicine Announces Strategic Transition
Editas Medicine recently announced that they will be making a strategic transition to a in vivo gene editing company. The company intends to develop a transformative in vivo medicine for the treatment of sickle cell disease and beta thalassemia. To learn more, read their FAQs......
SCDAA Statement on Recent Natural Disasters
SCDAA stands in solidarity with the warriors, advocates and community-based organizations who have been recently affected by natural disasters, including the devasting wildfires in California and the many hurricanes which hit southern states in the fall. As we pray for a speedy recovery, we send our sincere gratitude to the emergency response teams who worked tirelessly to contain the fires and provide hurricane assistance. If.....
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,.....
SCDAA Statement: CMS Cell and Gene Therapy Access Model
Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease. The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services (CMS) to participate in the Cell and Gene Therapy (CGT).....