Category Archives: News

Sickle Cell Disease Association names membership manager


The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Joel Nepomuceno as membership engagement manager. He brings experience in membership strategy, community building, project management and marketing.

Prior to joining the Sickle Cell Disease Association of America Inc., Nepomuceno served as the director of membership and development operations at Research!America, which advocates for increased federal health and biomedical research funding. During his tenure, he helped advance the organization’s mission by developing its membership strategy, focusing on member engagement and communication.

Previously, Nepomuceno was the membership manager at the National Council for Mental Wellbeing. While there, he worked to improve the member experience, oversaw database management and provided customer service to more than 3,400 organizational members.

Nepomuceno holds a bachelor’s degree in communications from the University of Maryland, College Park. He lives in Gaithersburg, Maryland.

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.

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.