Mother-Daughter Duo: Navigating Life with SCA
In this episode, Aaron speaks with Laura and Cameryn, a mother and daughter duo, about a rare disease called spinocerebellar ataxia (SCA) and the way it's impacted their lives.
Aaron Jun
Inside a family's fight against rare disease
Doctor after doctor, specialist after specialist, seemed to concur on only one point: They had never seen anything like what was happening to Santi.
Researching a new therapy for an ultra-rare disease: A look into the science of Enzyvant with Dr. Alex Solyom, senior medical director
We were lucky enough to have Dr. Alex Solyom join us for the pod. Dr. Solyom is the senior medical director at Enzyvant, where he and the team research a new therapy for an ultra-rare disease called Farber disease.
Advocating for Rare Disease in Mississippi
A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.
Healthcare is on the ballot, with Matt Cortland
Matt Cortland joins Aaron to talk about the upcoming midterm election and what's at stake for patients.
Learning to advocate for equitable healthcare: How to make your voice heard
In this episode, we speak with Peter Morley, a self-described "accidental advocate" who, despite living with multiple chronic conditions, fights on behalf of all Americans for fairer healthcare access.
The Affordable Care Act: What is at stake
Everything at stake in this latest fight over the Affordable Care Act, from pre-existing condition protections to affordable access, and what patients can do to fight for their care.
