Ohio Rare Disease Advocacy Day Summary | Batten Disease
Batten Disease Support, Research, & Advocacy (BDSRA) Foundation represented the [...]
Batten Disease Advocacy in Action | Suzette James
Suzette James, a late-onset CLN2 Batten disease mother to Maya [...]
What if? The Importance of Newborn Screening Advocacy to the Fennell Family
When Claudia Fennell sits at the dinner table with her [...]
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 [...]
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 [...]
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 [...]
