Category Archives: Uncategorized

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

MARAC Statement: Response to Oxbryta® Update

MARAC Statement: Response to Oxbryta® Update

August 6, 2026 – The Medical Research and Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news that Oxbryta® (voxelotor) will not be made available for the treatment of sickle cell disease.

Based on recent engagement with the Food and Drug Administration (FDA), Pfizer was informed that there is not a viable path to make Oxbryta available again in the U.S. We understand that this news is disappointing, especially given the significant unmet needs for people living with sickle cell.

In their statement, Pfizer confirmed its continued commitment to the sickle cell community and stated that they will be concentrating their ongoing research efforts on osivelotor, a sickle hemoglobin (HbS) polymerization inhibitor being investigated as a potential treatment for sickle cell disease (SCD). Pfizer will also continue to share Oxbryta data as it is published and has agreed to engage with MARAC in the near future to discuss these developments. MARAC’s sickle cell healthcare providers and researchers will continue to represent the sickle cell community in conversations with Pfizer and other industry groups and will help keep the sickle cell community informed of developments.

Although progress has been made in the treatment of sickle cell disease, there is still a limited number of therapies available for individuals suffering from the disease. MARAC encourages the pharmaceutical industry and the FDA to work with the sickle cell community to continue to look for therapies that not only address the clinical outcomes that are often evaluated in sickle cell studies but to also explore outcome measures and endpoints that address patient-reported outcomes that impact quality of life.

MARAC looks forward to continuing to partner with the pharmaceutical industry, government and the sickle cell community to find treatments for the sickle cell population.

Download the statement here.

SCDAA Seeks New Board Members

The success of any organization, for profit or not for profit, is measured by its leadership. As organizational leaders, we value the commitment, vision and passion our board members bring. The board of directors for Sickle Cell Disease Association of America, Inc. (SCDAA) looks to those who serve – or have served – so passionately, to nominate qualified individuals to the board of directors for SCDAA.

Areas of expertise that are needed include:

  • Fundraising experience
  • Financial management and budget oversight
  • Social media and marketing
  • Executive management
  • Legal experience: with contracts or human resources
  • Strategic planning: short- and long-term planning and implementation
  • Diversity implementation: recruitment of the next generation of board members from a broad range of cultural backgrounds

Board of directors and committee meetings are generally held in the evenings, between 6-8 p.m. EST, but are subject to change as warranted. Board members are expected to attend board meetings and serve on at least two of the committees and fulfill their fiduciary requirements.

If you are qualified and able to meet the above requirements, or if you know of a qualified potential candidate that you wish to nominate to the SCDAA board, please send your/their name, contact information and a brief bio to Phoelicia Blagmon, at pblagmon@sicklecelldisease.org with “SCDAA Board Nominee” in the subject line.

**Nominees and bios are due no later than July 18, 2026.

Thank you in advance for your participation in this important effort and we look forward to hearing from you.

SCDAA and NHLBI To Host Event

The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), in partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA), will host Research That Heals: Partnering to Transform SCD Care on June 25-26, 2026. This 1.5-day hybrid (in-person and virtual) community forum will be a crucial platform for engaging directly with the sickle cell disease (SCD) community, including individuals with SCD and their caregivers, healthcare providers and community-based organizations. During the forum, participants will discuss and develop solutions to enhance care and improve the quality of life for children and adults living with sickle cell disease.

Click here to register.

2026 National Abstract Competition

SUBMIT YOUR WORK

If you are a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people living with sickle cell disease and their families, the Sickle Cell Disease Association of America, Inc. would like to highlight your work at the 54th Annual National Convention, October 15-17, 2026, in-person.

To be eligible, abstracts must meet guidelines and be submitted by June 22, 2026. Late submissions will not be accepted. Abstracts will be reviewed and ranked by the national abstract review committee. We hope to notify you of acceptance beginning July 24, 2026. Abstract finalists will be judged during oral presentations and presented at the SCDAA Gala (Friday evening, October 16th)

“Best Abstract” in each category will be announced at the SCDAA 54th Annual National Convention. Special awards for the best student and trainee abstracts will also be given.

Submission Instructions and Guidelines

Abstract text must be written in English and contain the following:

  • TITLE: Use a concise title typed in CAPITAL LETTERS.
  • AUTHORS: List authors’ names (First name, middle initial, last name) and institutional affiliations as briefly as possible. Indicate authors who are trainees (such as student, grad student, post-doctoral fellow, intern, resident, apprentice, etc.) and list them first if the work is their project.
  • ABSTRACT TEXT:
  • Structure text utilizing the following subheadings: Objective, Methods, *Results, and Conclusions.
  • Submit abstracts in written form for scoring.
  • Authors can be modified to have less duplication of contact information for co-authors.
  • Abstracts without results will not be accepted.
  • Please do not submit tables or charts with your abstract.
  • ABSTRACT CATEGORY: If your abstract seems to fit more than one category, please select a first choice and a second choice – the abstract judges will decide.
  • CHARACTER COUNT:  5000 characters maximum (no exceptions).

2026 Presentations, Topic Categories, and Examples

Categories for abstract judging are listed here. Trainee presentations are a subcategory of each topic. If your abstract seems to fit more than one topic category, please select a first choice and a second choice – the abstract judges will decide which category fits best.

  • Public Health Policy
  • Community-Based Research
  • Basic and Translational Research
  • Clinical Research
  • Psychosocial Research
  • Gene Therapy Hematopoietic Stem Cell Transplant
  • SCD Global Health
  • Sickle Cell Trait

Abstract FAQs.

Black History Month 2026: Dr. Charles Drew

Our final #SCDHistoryHighlight of 2026 explores the life and career of Dr. Charles Drew, a pioneering physician whose work paved the way for our modern-day blood banking system. Thanks to his research, individuals with sickle cell disease have access to safe and timely blood transfusions.

Dr. Drew was born in 1904 in Washington, D.C. He was a talented athlete and earned a partial scholarship to Amherst College in Massachusetts, where he was one of the few African Americans on campus. After graduating, he taught biology and coached at Morgan College (now Morgan State University) before attending medical school at McGill University in Canada. During his residency at Montreal Hospital, he developed an interest in blood transfusions and their effectiveness in treating shock.

He began his medical career at Howard University, practicing as a faculty instructor for pathology and later taking an appointment at the Freedman’s Hospital as a surgeon. In 1940, he completed his postdoctoral studies at Columbia University and became the first African American to earn a Doctor of Science in Medicine degree.

His postdoctoral thesis, titled “Banked Blood: A Study on Blood Preservation,” determined how to process and preserve blood plasma — a strategy that increased the length of time that blood could be stored. This research was completed in time to be of great use during World War II, and Dr. Drew led efforts to collect, preserve and internationally ship approximately 14,500 liters of blood through the Blood for Britain campaign.

In 1941, Dr. Drew was appointed assistant director of the first American Red Cross Blood Bank. During his time with the organization, he invented the “bloodmobile,” which allowed blood to be collected and transported on-the-go. Dr. Drew strongly objected to the blood bank segregating their blood storage and ultimately resigned from his position in protest of this racist policy.

Dr. Drew went on to rejoin faculty at Howard University, where he worked until he tragically passed away in a car accident at the age of 45. Dr. Drew’s research lay the foundation for safe and accessible blood transfusions, and his advocacy promoted equity in medicine — key elements of wellness for individuals with sickle cell disease across the globe.

Black History Month 2026: Dr. Marilyn Hughes Gaston

This week, meet Dr. Marilyn Hughes Gaston, whose dedication and passion for health care led her to pave the way for equity. Dr. Gaston’s special focus on sickle cell disease helped shape our understanding of the condition and its management.

Born in 1939, Dr. Gaston’s family faced poverty and discrimination, but she knew by age nine that she wanted to become a physician. When she was a teenager, her mother became ill with what would later be diagnosed as cervical cancer. The family had no health insurance and faced other barriers to access, which meant Dr. Gaston’s mother was not properly treated. After witnessing her mother collapse in their living room due to the lack of care, Dr. Gaston resolved to overcome the odds and pursue a career in medicine.

Dr. Gaston earned an undergraduate degree at the University of Miami before enrolling in the University of Cincinnati College of Medicine, where she was the only Black woman in her class. She became interested in sickle cell disease during her internship at Philadelphia General Hospital in 1964. According to Changing the Face of Medicine, “one evening, during her internship, Dr. Gaston admitted a baby with a badly swollen hand. No trauma was reported, and she could not find the cause of the swelling. Her supervising resident suggested she check the blood work for evidence of sickle cell disease. The child did have SCD, and his hand was swollen from infection. Gaston was appalled that she hadn’t even considered checking for this condition and set out to learn everything she could about it.”

Dr. Gaston dutifully began her studies of sickle cell disease, securing federal grants and establishing herself as a leading expert in the condition. In 1986, she published her landmark research on penicillin prophylaxis. Her national study determined that giving children with SCD preventative penicillin from birth reduced the complications of sickle cell disease. Her work indicated that newborn screening was key to identifying SCD early and treating it properly. Newborn screening now identifies many conditions beyond sickle cell and is standard practice in U.S. public health.

In addition to her groundbreaking work in the sickle cell space, Dr. Gaston spent many years as a medical expert with the National Institutes of Health and went on to become the director of the Bureau of Primary Health Care in the U.S. Health Resources and Services Administration. She was the first Black woman to direct a public health service bureau in the country. Her dedication to improving health care for poor and underserved families has left a lasting mark on history. Thank you, Dr. Gaston, for your commitment to our community.

Black History Month 2026: Dr. Roland Scott

Our next #SCDHistoryHighlight shines a light on the life and legacy of the “father of sickle cell disease” – Dr. Roland B. Scott. Dr. Scott’s groundbreaking research and dedication to patients during a time of intense discrimination paved the way for progress in SCD treatment.

Dr. Scott was born in 1909 and graduated with his medical degree from Howard University in 1934. He spent the majority of his career in the pediatrics department of Howard University. During this time, he began to notice the high number of African American children in the emergency room experiencing sickle cell symptoms and complications.

Dr. Scott was a trained allergist, but he switched his focus to help improve treatment for this misunderstood disease. A compassionate pediatrician, Dr. Scott held office hours in the evenings during which he would see African American children and families who were discriminated against and denied access to medical treatment.

Dr. Scott would go on to publish hundreds of articles on sickle cell disease during his time at Howard University. Although he did not specialize in hematology, in 1948 Dr. Scott published a paper on the sickling of red blood cells in newborns. This paper established a better understanding of sickle cell disease and laid the groundwork for newborn screening as we know it today.

In addition to being a dedicated researcher, Dr. Scott was a fierce advocate for sickle cell disease. His advocacy played a large role in the federal government’s passing of the Sickle Cell Anemia Control Act of 1971, which ensured nationwide funding for SCD research and treatment.

In 1972, Dr. Scott founded the Howard University Center for Sickle Cell Disease, which continues to conduct research and provide care to sickle cell patients today. He passed away in 2002. Dr. Scott’s work and advocacy changed the landscape for sickle cell disease, and we owe so much of our capability to treat and understand sickle cell to his efforts.