“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.
Pregnancy and Motherhood for a Woman with SMA
Steps to Improve Data Gathering of Rare Diseases
Rare Patients Learn to Make Their Voices Heard
Empowering Patient Organizations with Real-World Data
A Healthcare Communications Student Gets an Education as a Patient
Expanding the CRISPR Toolkit
Marrying Antibodies to RNA Therapies to Target Previously Inaccessible Tissues and Cells
Expanding Access to Whole Genome Sequencing Across the Globe
A First-in-Class Approach to Treating a Rare and Chronic Liver Disease
A New Approach to Treating a Rare Endocrine Disorder
Detecting Genetic Disease Prior to Birth
Turning Words into Action: Equity, Diversity, and Inclusion in Rare Disease
Chasing Cures
A Map to Navigate A Rare Disease
A Popular Cancer Target Is Eyed for a Rare Immune Disorder
Leveraging a Gene Therapy Approach to Maximize Speed and Minimize Costs
Programing the Body to Make Its Own Medicine with Gene Therapy
Developing in Vivo Gene Editors that Target Liver Diseases
A Find-and-Replace Approach to Fixing the Mutation Underlying Sickle Cell Disease
A Bet on a Unique Set of Vectors
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