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Speaker

Ashley Valentine

CO-FOUNDER, SICK CELLS
Lisle, Illinois, United States
Ashley is a Co-Founder and President of Sick Cells nonprofit. She is the youngest sibling of her family. Her older brother and Co-Founder of Sick Cells, Marqus Valentine, has sickle cell anemia, Hgb ss. Growing up, Ashley spent much of her childhood charming hospital playroom attendants while Marqus was frequently hospitalized for pain crises, fever, and multiple complications from SCD.
While in high school, Ashley first recognized the disparities for SCD when her brother developed seizures due to strokes caused by sickle cell. As a result, he lost his motor skills. The family’s insurance would not cover Marqus’ rehabilitation, because sickle cell is an unknown chronic disease. The insurance company told the Valentine family that Marqus was considered “not disabled enough” for medical help. Ashley and the family worked together to rehab 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 the drive in Ashley to educate others about SCD and advocate on behalf of her family and the sickle cell community.
As an adult, Ashley completed her Master’s in Research Methods from the University Of Aberdeen, Scotland. She focused on disparities in healthcare for people with SCD in London. After graduate school, she worked with University of Illinois in Chicago’s sickle cell program and later transitioned into policy work in Washington, DC. While working as a policy researcher, Ashley successfully wrote sickle cell disease into part of an $8 million Centers for Medicaid and Medicare Services (CMS) funding opportunity to address disparities for adults in the emergency department.
To date, Ashley work with Sick Cells has activated the SCD community to pass federal legislation in 2018 and become stakeholders in the rare disease space. In 2019, Ashley and her brother, Marqus, were named the Chicago Red Cross Heroes and inducted into the Fresenius Kobi Blood Donation Hall of Fame for their work in federal legislation and brining awareness to sickle cell disease and the needs of the community.
Speaking In
12:00 PM - 12:45 PM (EDT)
Thursday, October 29
Opening remarks given by Julie Gerberding, MD, MPH, Executive Vice President and Chief Patient…