NEWS: Bean Introduces Bipartisan Resolution in Support of Americans with Batten Disease
Read the press release below from Florida Congressman Aaron Bean's [...]
The story behind this year’s International Batten Disease Awareness Day T-shirt design
As BDSRA Foundation announced its winner of the International Batten [...]
Resolution signed declaring June 9th Batten Disease Awareness Day in NY
ALBANY, N.Y. – A resolution has been signed to declare [...]
READ | The Illuminator May Edition Has Arrived!
May 2023 [...]
Batten Families in the News | Get to know the Murfield & Beedle Families
The last few months have been a whirlwind for the [...]
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 [...]
