Ashley ValentineCo-Founder and President, Sick Cells Nonprofit
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.
Ashley first recognized the disparities for SCD when her brother developed seizures due to strokes caused by SCD. The family’s insurance would not cover Marqus’ rehabilitation, because sickle cell is an unknown chronic disease. This event solidified the drive in Ashley to educate others about SCD and advocate on behalf of her family and the sickle cell community.
Currently, Ashley works as President of Sick Cells. The organization focuses on bringing the patient voice to decision-makers. Sick Cells has activated the SCD community to advocate to pass federal legislation in 2018, which was signed into law. Sick Cells also recruited the largest showing of SCD advocates to attend Rare Disease Week and lobby on Capitol Hill for rare disease and sickle cell disease legislation. Most recently, Sick Cells worked with partners and SCD advocates to submit over 90 comments, the highest comment submission, for a value assessment that is currently underway.
In her professional career, Ashley has worked as a policy researcher. While in this role, Ashley successfully wrote sickle cell disease into part of an $8 million Centers for Medicaid and Medicare Services (CMS) funding opportunity. Ashley also worked at Children’s National Medical Center in Washington, DC as a clinical researcher for their sickle cell department.
Ashley received a Master’s Degree in social research methods from the University of Aberdeen in Scotland. While there, she focused on health disparities for people living with SCD in the United Kingdom.