Adrienne Shapiro: Sickle Cell Disease Patient Advocate
Adrienne Shapiro is the fourth generation of mothers in her family to have children born with sickle cell disease. Ms. Shapiro was an early advocate of innovative stem cell and gene therapy work by UCLA scientist Dr. Don Kohn. This research has led to an on-going, CIRM-funded clinical trial for sickle cell disease. Ms. Shapiro is the patient advocate representative on a Clinical Advisory Panel (CAP) that CIRM is creating to help guide this clinical trial. She offers advice on how to best design the trial to meet the needs of this patient population, something that could be vital in helping recruit patients for the trial.
As Founder and Science Administrator of the Axis Advocacy website and as an ambassador for the Americans for Cures Foundation, Shapiro has become a vocal stem cell activist, speaking to various groups about the importance of CIRM’s investments in both early stage research and clinical trials. For more information about CIRM-funded sickle cell disease research and clinical trials, visit our sickle cell disease fact sheet.