Adrienne Shapiro
Adrienne Bell-Cors Shapiro is a Sickle Cell Disease and stem cell Patient Advocate, the Founder and Science Administrator of the Axis Advocacy foundation, and a fifth generation mother of a child with Sickle Cell Disease. She is a recipient of the highest honor in the regenerative medicine community, the 2018 Stem Cell and Regenerative Medicine Action Inspiration Award. Her experience includes attending educational conferences and seminars, as well as meeting with lawmakers to promote support for the Sickle Cell Education Act. She was one of the first supporters of the work done by UCLA’S Dr. Don Kohn in bone marrow and later stem cell transplants. As a firm believer that stem cell science will cure Sickle Cell Disease, she has dedicated a large portion of her life to improving the lives and overall healthcare of those living with the disease. In the past three years Ms. Shapiro has found her voice as a stem cell activist, speaking at multiple forums in support of the funding for clinical trails through the California Institute for Regenerative Medicine (CIRM) and her role as an ambassador for the Americans for Cures Foundation. As a stem cell advocate, Adrienne, is passionate about the role of stem cells in medicine, including its potential for drug discovery of more effective treatments in mental illness and addiction.
One in 500 African Americans has Sickle Cell Disease. Caused by blocked blood vessels, sickle cell disease is very painful, requiring life-long pain management. Pain control has now become the newest and continuing nightmare. Adrienne tells harrowing stories of long waits in hospital emergency rooms while patients suffer, followed by maddening arguments with staff reluctant to provide enough help to control the intense pain when patients are finally admitted. “When my daughter was a kid, everyone wanted to make her feel good,” Adrienne says. “But when we moved from the pediatric side to the adult side, they treated her as a drug seeker and me as an enabler. It’s such a slap in the face.”
There is only one sure way to stop this story from repeating for generations to come, Adrienne says, and that’s research. She believes stem cell science will be the answer. However, until we have a cure for Sickle Cell Disease, pain is a fact of the illness and humane treatment and support is required. Thus, Adrienne and Axis Advocacy are dedicated to supporting scientists and researchers as well as patients, caregivers and their families. Response to the opioid crisis is devastating the sickle cell community and leaving innocent patients in excruciating pain.