Headshot of Ashley Valentine, a PCORI Advisory Panel member and president and co-founder of Sick Cells

Lisle, Illinois

President, Sick Cells
Representing: Patients, Caregivers, and Patient Advocates
Term Ends August 2024

Ashley Valentine is a co-founder of Sick Cells along with her older brother Marqus Valentine. Marqus was diagnosed with sickle cell disease (SCD), and she spent much of her childhood in hospital playrooms while Marqus was frequently hospitalized for pain crises, fever, and multiple complications from SCD.

While in high school, Valentine first understood the disparities for SCD when her brother developed seizures and lost his motor skills, and their family’s insurance would not cover Marqus’ rehabilitation. The insurance company told the Valentines that Marqus was considered “not disabled enough” for medical help. Valentine and the family worked together to rehabilitate Marqus at home; they taught him how to hold a fork again and redeveloped his ability to speak, leading to a successful recovery. This event solidified Valentine’s drive to educate others about SCD and advocate on behalf of her family and the sickle cell community.

Valentine completed her master’s degree in Research Methods from the University of Aberdeen, Scotland. Valentine focused on disparities in health care for people with SCD in London. After graduate school, Valentine worked with the University of Illinois in Chicago’s sickle cell program and later transitioned into policy work in Washington, DC, and eventually co-founded Sick Cells with Marqus.

Valentine has a focus on improving the lives of people with SCD and ensuring that SCD advocates are involved with all decisions as it relates to their health.

Conflicts of Interest

As of March 31, 2021

  • BioMarin, Advisory Council Member
  • Pfizer, Advisory Board Member
  • Global Blood Therapeutics, Advisory Board Member
  • CRISPR Therapeutics, Consultant


Person Type
Panel / Committee