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 [...]
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 [...]
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 [...]
