She is the first sickle cell patient to receive a revolutionary gene therapy using a tool called CRISPR. She now shares her symptom-free success story on a global stage.
Meta/User Description A tireless search for her own diagnosis and her sons pushed her to create The Jansen s Foundation, an organization that brings awareness, research funds, and hope for a cure to this rare and debilitating skeletal condition.
Driven by a desire to find answers about her debilitating diagnosis, she and a team of research-savvy long COVID patients formed the Patient-Led Research Collaborative to advocate, educate, and to one day hopefully cure the disease.