Six years after FDA approval, VanHoutan reflects on Brineura
The power of advocacy can be defined by Tracy VanHoutan’s [...]
Advocacy in Action | Suzette James
Suzette James, a BDSRA Foundation Board of Directors member and [...]
BDSRA Board Member, Batten mother will be a panelist in FDA virtual workshop
The fight for gene therapy has been a long, uphill [...]
Stronger together: The story of four Batten mothers who teamed up to speak to the FDA
It started with one mother of two CLN2 Batten disease-affected [...]
BDSRA Supports Newborn Screening in Ohio HB110
State Representative Scott Oelslager, Chair Ohio House Finance Committee Ohio [...]
