Category Archives: News

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.

SCDAA names events manager

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Natasha Thomas as events and special projects manager. Thomas previously worked for the association, including as an events consultant for the last three years.

In her new position, Thomas will manage the planning, logistics, operations and execution of the association’s events, including the annual national convention, annual Warrior Walkathon and other programs and special initiatives. 

Previously, Thomas served as deputy director of Amara Legal Center, a legal aid organization serving the Washington, D.C., region. She supervised organizational communications, supported grant applications and fundraising and performed human resources and finance functions. She joined Amara Legal Center as operations and resource manager.

For 14 years from 2007 to 2021, Thomas served in different roles with the Sickle Cell Disease Association of America Inc. Her most recent position was development and special events coordinator, where she supported association operations, project management, human resources and office management. She previously held the positions of member services manager and project associate.

Advocacy Alert: Save the Sickle Cell Data Collection Program

Last week, the Trump administration announced drastic changes and reductions to federal health programs that support the sickle cell disease community. Specifically, on April 1, all the staff that oversee the Sickle Cell Data Collection (SCDC) Program at the Centers for Disease Control and Prevention (CDC) were terminated. We are very concerned about the future of this program, and we are asking you to please call or email your Representative and Senators to ask that they reverse the cuts and protect the existence of and funding for the Sickle Cell Data Collection Program.

What is the issue?

The CDC cuts are of particular concern to the sickle cell disease community. The Sickle Cell Data Collection program, which now operates in 16 states, collects data for the sickle cell disease community on things like prevalence, insurance coverage, health outcomes and much more. This data is used to develop interventions and policies that aim to improve care for sickle cell warriors. CDC plans to expand the program across the US.

Collecting data in a centralized place is critical to improving care for any disease. Elimination of the SCDC Program would lead to:

  • Poorer health outcomes for SCD warriors. Data can tell us what treatments work best and for whom, allowing health providers to tailor care.
  • Increased costs to the health care system. The less we know about a disease, the harder it is to provide preventive care to stop complications from arising.
  • Stalled progress on research and innovation. Data guides research which in turn leads to more and better treatment options.

We are calling on everyone (not just member organizations or Warriors in one of the 16 states) to contact their Representative and Senators to ask that they protect the Sickle Cell Data Collection Program!

What can you do?
Step One: Find contact information for your lawmakers’ offices!

Step Two: Say or email (please feel free to personalize)

I am [calling/emailing] as a member of the sickle cell disease community and as a constituent to ask that you protect the Sickle Cell Data Collection Program at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the Sickle Cell Data Collection Program, the only surveillance system dedicated to sickle cell disease, is housed. This program helps collect important data on sickle cell disease which in turn:

  • Helps lead to new and more effective treatments.
  • Guides the development of interventions and policies that aim to improve care for sickle cell Warriors and lower costs for the healthcare system as a whole.
  • Prompts where and when new clinics are built in order to best serve the community.  

I am relying on you, as my [Senator/Representative] in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. Thank you for your time and attention to this matter.

SCDAA Statement on the Measles Outbreak

SCDAA is aware of and monitoring the measles outbreaks that have been reported in several states. There is a fair amount of confusion and misinformation online and in the media about how to protect yourself and your family during this time. Parents of young children may be feeling especially anxious and overwhelmed, particularly if your child has sickle cell disease, which may increase the risk of a weaker immune system and infection. It is worth noting that we have had few cases of measles and sickle cell disease in recent U.S. memory.

Measles can cause a fever and rash that starts on the head and moves to the body, arms and legs. It is highly contagious and can be spread from an infected person to their friends and family. As with any infection, if a fever is present, prompt evaluation and treatment may be necessary. In addition, parents can help their children stay hydrated and monitor for an acute pain episode.

SCDAA reminds the sickle cell community that the best way to prevent the measles is through routine vaccinations These include the MMR vaccine and vaccinations for pneumococcal infections. If you and your family have been appropriately vaccinated for measles (receiving two vaccinations at least four weeks apart), the chance that you will catch the measles is low. If you or your family are behind on your vaccinations, now is the time to get up to date! To learn more about the measles and keeping your children safe, click here.

RESOURCES:

Black History Month: Our Current Member Organizations

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 the key to our progress.

We currently have 57 member organizations that serve sickle cell warriors, caregivers and community members across 30 states. We define our membership into three categories:

  • Direct Service Agency – These organizations provide support including but not limited to: Case management, testing and screening, counseling and/or medical home assistance.
  • Support Service Agency – These organizations provide support including but not limited to: Medical bill assistance, transportation, career counseling/planning, medical co-pay, funeral/burial, assistance, housing, clothing, food, SSI/Disability, insurance application assistance.
  • Advocacy Service Agency – These organizations provide support including but not limited to: Disseminating SCD/SCT information, attending health fairs and participating and/or host local advocacy events.

We deeply value the work of our member organizations, and we work collaboratively across the country to affect positive change at the national, state and local levels. We join together in Washington, D.C., during our Advocacy Days events to raise our voices and ensure that our community-based organizations’ representatives understand the issues facing the sickle cell community. Our member organizations also coalesce during our Annual National Convention in October to support each other in their goals and grow their missions.

All told, our member organizations collectively serve over 500,000 children and adults living with sickle cell and their caregivers. These organizations are our boots on the ground, taking dreams and making them realities. As we step into the future, we look to these groups to steer the next era of sickle cell history. Click here to meet our member organizations.  

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 1960s, the civil rights movement brought many issues of racial inequality, including health care disparities, to the foreground. As greater attention was paid to these differences in treatment, access and research, awareness of sickle cell disease increased. More people began to recognize the urgent need for better care and advocate for those improvements.

The National Sickle Cell Anemia Control Act of 1972 was introduced in the senate at the end of 1971 and passed into law the next year. It authorized the establishment of the first federal programs promoting sickle cell education, counseling, research, treatments and voluntary screening. The National Sickle Cell Disease Program of the National Heart, Lung and Blood Institute of the National Institutes of Health was implemented, and federally funded Comprehensive Sickle Cell Centers were established.

Without this crucial piece of legislation, and the tireless advocacy that helped to pass it, sickle cell disease treatment and research would not be where it is today. The National Sickle Cell Anemia Control Act of 1972 created the necessary foundation to which we owe a great deal of progress. Its passage is a testament to the power of community action and advocacy as we continue to make #SickleCellHistory!

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 during a meeting with the 15 member organizations that would soon become our original member organizations. Many of these groups were providing essential support and services to their communities for years prior to this meeting. Each organization offered key perspectives on our shared needs and strategies for reaching our goals. Before too long, SCDAA grew to include other early member organizations, including:

  • SCDAA State Association (Alabama)
  • SCDAA Mobile Chapter (Alabama)
  • SCDAA San Diego (California)
  • SCDAA Connecticut Chapter
  • SCDAA Florida State Association
  • SCDAA Dade County Chapter (Florida)
  • SCDAA Escambia (Florida)
  • SCDAA Northeast Florida
  • SCDAA St. Petersburg Chapter (Florida)
  • Uriel Owens Sickle Cell Disease Association of the Midwest (Kansas)
  • SCDAA – Northwest Louisiana Chapter
  • SCDAA Michigan Chapter
  • SCDAA Kansas City (Missouri)
  • SCDAA Metro St. Louis (Missouri)
  • SCDAA Buffalo & Western New York
  • SCDAA South Piedmont (North Carolina)
  • SCDAA Eastern North Carolina
  • SCDAA Ohio Sickle Cell and Health Association
  • SCDAA Oklahoma
  • SCDAA – Philadelphia/Delaware Valley Chapter (Pennsylvania)
  • SCDAA Texas State Association
  • SCDAA Dallas (Texas)
  • SCDAA Ft. Worth (Texas)
  • SCDAA Texas Gulf Coast (Texas)
  • SCDAA San Antonio (Texas)

While some of these organizations have changed their names and others have closed, many are still working to advance progress in their communities today. Organizations like,  the SCDAA Mobile Chapter, SCDAA Connecticut (now known as Michelle’s House), SCDAA Escambia and Santa Rosa Counties, SCDAA St. Petersburg Chapter, SCDAA Dade County Chapter, Sickle Cell Disease Association of Florida, Uriel Owens Sickle Cell Disease Association of the Midwest, SCDAA Northwest Louisiana Chapter, SCDAA Michigan Chapter, Ohio Sickle Cell and Health Association and SCDAA – Philadelphia/Delaware Valley Chapter remain committed SCDAA member organizations – over 50 years later.

Our member organizations have always been crucial to our mission. As our boots on the ground, they do incredibly important work that is tailored to the communities they serve. Each of these member organizations holds a well-deserved place in SCDAA history.

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.

Dr. Whitten was born in 1922 in Wilmington, Delaware. He graduated from Howard High School and went on to receive his bachelor’s from the University of Pennsylvania and his medical degree from Meharry Medical College in Nashville, Tennessee. He practiced and studied at many hospitals on the east coast before moving to Detroit, Michigan, to study pediatric hematology under Dr. Wolf Zeltzer. In 1956, he was selected to serve as the clinical director of pediatrics at Detroit Receiving Hospital, becoming the first African American to hold that position.

Dr. Whitten is widely celebrated to this day for his dedication to sickle cell screening. In 1974, he established the Sickle Cell Detection and Information Center in Detroit, Michigan. The center was the most comprehensive community program in the country at the time. During his time at the center, Dr. Whitten educated children and families about sickle cell disease and created color-coded dice (also known as “Whitten Dice”) to teach couples about the genetic risks of the condition.

MARAC Statement: ASH Report on Exercise and SCT Crisis Risk

Feb. 5, 2025 – 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.

The ASH report, No Scientific Link Found Between Sickle Cell Trait and Sudden Death, brought together expert hematologists and forensic pathologists to take a closer look at the existing available research to answer two primary questions:

  • Do uncomplicated acute pain crises occur in people with SCT?
  • Can higher levels of physical activity result in sudden death in individuals with SCT?

The group conducted a multi-database search, identifying 1,474 citations. Only seven of those studies reported original data, included laboratory testing for SCT in individuals and addressed the two primary research questions.

Of these studies, none assessed acute pain crises in individuals with SCT compared to those with SCD and only one citation described death in individuals reported to have SCT, and this study of active-duty U.S. soldiers found that SCT was associated with a higher risk of heat-related-exertional rhabdomyolysis but not a higher risk of death. After the U.S. military made changes to its exercise policies, the risk of death was no different in individuals with SCT compared to individuals without SCT. There was no direct evidence of acute painful episodes in people with sickle cell trait.

The review had some limitations including a lack of high-quality, peer-reviewed direct evidence. Following the results of this study, ASH revised its position statement on SCT, which states that listing “sickle cell crisis” or “sickle cell trait” as a cause of death on an autopsy report for an individual with sickle cell trait is medically inaccurate and without medical evidence of causation.

WHY IS THIS IMPORTANT?

Some lawyers and medical examiners have attempted to use sickle cell trait as a reason for death in, for example, college athletes who have died after rigorous training, or for individuals who have died while in police custody. This ASH statement is clear that judges should no longer accept this argument in court. This thoughtful evaluation represents a systematic review of the scientific evidence by hematologists convened by ASH (Weeks et al. 2025).

SCDAA’s Medical and Research Advisory Committee (MARAC) supports these findings and reports but recognizes that more research is needed. MARAC will continue to work with our experts as well as with our partners at ASH to provide clear guidance to the sickle cell community about sickle cell trait and how it relates to exercise and pain crisis. SCDAA continues to recommend that all athletes practice universal precautions to avoid the risk of rhabdomyolysis or heat injury.

REFERENCES:

Weeks LD, Wilson AM, Naik RP, Efebera YA, Murad MH, Mahajan A, McGann PT, Verhovsek M, Weyand AC, Zaidi AU, DeBaun MR, Donald C, Mitchell RA Jr. Sickle Cell Trait Does Not Cause “Sickle Cell Crisis” Leading to Exertion-Related Death: A Systematic Review. Blood. 2025 Jan 30:blood.2024026899. doi: 10.1182/blood.2024026899. Epub ahead of print. PMID: 39882975.

Lichtsinn, H. S., Weyand, A. C., McKinney, Z. J., & Wilson, A. M. (2021). Sickle Cell Trait: An Unsound Cause of Death. The Lancet, 398(10306), 1128-1129.

Mack AK, Bercovitz RS, Lust H. edited by Lemonick MD. Some Medical Examiners Say Sickle Cell Trait Causes Sudden Death—They’re Wrong. Scientific American June 20, 2021.

LaForgia M, Valentino-DeVries J. How a Genetic Trait in Black People Can Give the Police Cover. New York Times. May 15, 2021.

Thogmartin JR et al. Sickle Cell Trait-Associated Deaths: A Case Series with a Review of the Literature. J Forensic Sci. 2011 Sep; 56(5):1352

Click here for a printable version of this statement.