Shandra is a young adult rare disease advocate with Friedreich’s Ataxia. She recently earned her PhD in Genetics and Genomics, where she developed a gene replacement therapy for an ultra-rare, pediatric neurological disease. Shandra is currently a Scientific Engagement Fellow for PTC Therapeutics.
In 2021, she graduated from the inaugural YARR Leadership Academy. Shandra uses her unique position as both a patient and a scientist to advocate to Congress and the FDA in areas such as patient-focused drug development, clinical trial design, research funding, and patient access/care initiatives.
Rare Young Adults Member since July 2021
Rare Young Adults Leadership Academy Class of 2021
Capstone Topic: Public Policy Fellowship for a Biopharmaceutical Company
Rare Disease Connection
Friedreichs Ataxia
Education
PhD in Genetics from University of Florida
Affiliations
- FARA
- Founding Board Member of Wheely Big Dream Inc.
Fun Fact
I advocate to bridge the gap between patient needs, scientific research, and government policy.
