Episode description

The Food and Drug Administration has approved gene therapy as a treatment for sickle cell disease, effectively making a cure available to many people affected by the genetic disease. Sickle cell disease is a group of inherited red blood cell disorders and is the most common form of an inherited blood disorder. 

In this episode, Kai is joined by Ashley Valentine of Sick Cells, which seeks to elevate the voices of the patient community to influence decision makers and empower people with the disease to use their voices and not feel alone. Ashley co-founded the organization along with her late brother Marqus Valentine, who had sickle cell disease. She helps put this historic F.D.A. decision into context and shares how her own life experience informs her work advocating for people with sickle cell disease. 

Plus, we meet 21-year-old Magaly Ghonda, who underwent her own sickle cell treatment. Magaly shares how living with the genetic blood disorder shaped her life, the realities of a sickle cell cure, and what she’s looking forward to in her post-sickle cell future. 

Tell us what you think. Instagram and X (Twitter): @noteswithkai. Email us at notes@wnyc.org. Send us a voice message by recording yourself on your phone and emailing us, or record one here.

Notes from America airs live on Sundays at 6 p.m. ET. The podcast episodes are lightly edited from our live broadcasts. 

Tell us what you think. We're @noteswithkai on Instagram and X (Twitter). Email us at notes@wnyc.org. Send us a voice message by recording yourself on your phone and emailing us, or record one here.

Notes from America airs live on Sundays at 6 p.m. ET. The podcast episodes are lightly edited from our live broadcasts.