“Most Likely Not to…,” a musical comedy written and performed by people with the rare, neuromuscular condition spinal muscular atrophy, will make its world debut in New York City on World Rare Disease Day and be streamed live online. The show, part of Genentech’s SMA My Way awareness campaign, highlights the absurdities that people with disabilities often experience. We spoke to the show’s lead actress Shannon DeVido, and the show’s creative director Adam Pryor, about the play, living with SMA, and DeVido’s pursuit of a career as a performing artist despite having the condition.
How Inhaled mRNA May Help Rare Disease Patients Breathe Easier
Changing What’s Possible with Cell and Gene Therapies
Why Flying with a Wheelchair Is a Civil Rights Issue
Mapping Spheres of Influence
Bringing Precision to the Treatment of Rare Cancers
The Challenges of Developing a Therapy for Pregnant Women with A Rare Condition
How One Drug Developer Is Addressing Health Inequities
Accelerating the Development of Genetic Medicines with AI
Leveraging AI to Address the Neuropsychiatric Conditions Associated with a Rare Disease
In Pursuit of a Treatment for His Son, A Lawyer Becomes a Biotech Executive
In Push for Treatment, a Patient Organization Becomes a Trial Sponsor
Delayed Diagnosis of Rare Diseases Takes Staggering Economic Toll
A Cell Therapy to Control Heart-Damaging Inflammation in Duchenne
Stimulating the Growth of Muscle Mass in People with Neuromuscular Diseases
Turning Grief into Action
A Plea to the FDA to Give an Ultra-Rare Disease Drug a Fair Hearing
How the Woolly Mammoth Beat a Path to Better Gene Therapies
A Genetic Counselor’s Journey into Patient Advocacy
A Company in the Fold of Rare Disease
Disabling Antibodies that Drive Rare, Immunological Conditions
Create your
podcast in
minutes
It is Free
The emPOWERed Half Hour
NABOR® TALKS
U.S Property Podcast
Aligned Money Show
The Ramsey Show
Planet Money