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History

History

  • Celebrating more than 50 years of leadership and progress.

    SCDAA was founded in 1972 as the first organization to address concerns about sickle cell disease on a national level. Since then, our community has made enormous progress in raising awareness, developing new treatments and advocating for a better quality of life for sickle cell warriors. Learn more about our history.

  • Meet Dr. Charles F. Whitten

    Dr. Charles F. Whitten was a groundbreaking pediatric hematologist and the co-founder of SCDAA. His dedication to supporting the health of sickle cell patients paved the way for advances in screening, education and more. Dr. Whitten’s pioneering work makes him one of the most important figures in sickle cell history. Read more about his life and work.

Our Origin Story

In 1971, 15 community sickle cell organizations met at “Wingspread,” a conference center in Racine, Wisconsin, to discuss a national coordinated approach to addressing issues related to sickle cell disease. Although sickle cell disease was first identified in the United States in the early 1900s, progress was slow and treatment options were limited. These organizations knew that more needed to be done, and they worked together to lay out the strategies that would become the foundation for today’s association.

Our organization was officially formed a year later by Dr. Charles F. Whitten and Dorothy Boswell as the National Association for Sickle Cell Disease (NASCD). The 15 community-based organizations that attended the conference at Wingspan became our first member organizations.

The National Sickle Cell Anemia Control Act of 1972

One of NASCD’s earliest goals was to support the passage of the National Sickle Cell Anemia Control Act of 1972. Dr. Whitten and our member organizations pushed federal lawmakers to take necessary steps to research the disease and support the individuals and families affected by it. These efforts resulted in 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. This important bill created the necessary foundation to which we owe a great deal of today’s progress.

Sickle Cell History Highlights

1983

September was officially declared National Sickle Cell Awareness Month following a campaign led by NASCD. The proclamation was signed into law by President Ronald Regan.

1984

Doctors discovered that a bone marrow transplant, originally intended to treat leukemia, cured a child’s sickle cell disease. New research begins to explore this path to a universal cure.

1998

The U.S. Food and Drug Administration (FDA) approved hydroxyurea to treat adults with sickle cell disease.

2001

Researchers successfully cured sickle cell disease in a mouse using gene therapy. This was an important step forward in developing this technique for humans.

2002

The Health Resources and Services Administration’s Newborn Screening Program is launched. This successful legislative initiative secured an unprecedented increase of $4 million for newborn screening projects.

2009

June 19 is officially designated by the United Nations as World Sickle Cell Day.

2017

Gene therapy is used to cure a human with sickle cell disease.

2019

SCDAA and SiNERGe host the first annual Shine the Light on Sickle Cell event, a 24-hour awareness event held on World Sickle Cell Day.

2021

SCDAA launches its Clinical Trial Finder, a centralized website to help people with sickle cell disease, their families and caregivers find clinical trials.

Becoming the Sickle Cell Disease Association of America

NASCD officially changed its name to the Sickle Cell Disease Assocation of America in 1993, and in 2004, we moved our headquarters to Baltimore, Maryland. Today, our organization has grown to include over 50 member organizations across 29 states. Read more about our current mission and vision.