Batten Families in the News | Get to know the Heath & Niciejewski Families
Two Batten families recently had their stories told by local [...]
READ | The Illuminator April Edition Has Arrived!
April 2023 [...]
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 of Directors Quarterly Meeting | April 23, 2023 Agenda
Read the agenda below for the BDSRA Foundation Board [...]
BDSRA 2023 Annual Family Conference Help Grant
Conference Help Grant Because of forward-thinking and generous donors who [...]
Introducing the International Batten Disease Awareness Day T-Shirt Design Contest!
BDSRA Foundation is holding a T-shirt contest to determine the [...]
READ | The Illuminator March Edition Has Arrived!
March 2023 [...]
BDSRA Board Member, Batten mother will be a panelist in FDA virtual workshop
The fight for gene therapy has been a long, uphill [...]
Rare Disease Week offers a storybook ending and road for optimism
By Patrick Kotnik - BDSRA Marketing & PR Coordinator We [...]
