Andrea Williams founded and leads the Children’s Sickle Cell Foundation in Pittsburgh, PA. She is a parent representative and site lead in the project. Her youngest son, Jonathan, was diagnosed at birth with sickle cell disease (SCD) through the universal National Newborn Screening Program. Her son’s diagnosis spurred Andrea to start the Children’s Sickle Cell Foundation (CSCF) in Pittsburgh. She envisioned an organization that would specifically serve the needs of children with SCD and their families and that would help fund research for a cure.

Jonathan’s special needs presented unique challenges that changed her involvement from helping out at school events to focusing on educational advocacy for her son, and for children like him. The situation with Jonathan made Andrea realize that what happened in her family could be happening in other families as well. The steps she took to support her son needed to be discussed at a systems level so that many other children and families would benefit.

Andrea was learning a lot as a parent partner and site lead for the Sickle Cell Disease Treatment Demonstration Project, a component of NICHQ’s WISCH initiative. That was her first experience with using quality improvement methods to improve existing systems, and she chose to participate because of the potential for making real changes in the care and treatment of people with sickle cell disease. Today, Andrea advocates children with Sickle Cell Disease and their families.

Representative Publications:

Sickle Cell Disease, 2015: A Patient Advocate’s Perspective

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