Our Son Ollie – A Mother’s Story
by SUSIE EGR This is our handsome son, Oliver James Egr. He is a big piece of our "why” and our superher...
BBDF 101 – Next Steps to Clinical Trials
In July, BBDF sponsored the Batten Disease Support and Research Association Family Conference where we ha...
August Update – Next Step to Clinical Trials
With only four months to go BBDF and our Batten families are hard at work to fund the clinical trial! Tak...
Go Tyler! Beat Batten! – A Sister’s Story
by JAMIE KIM My brother, Tyler, has always been the most energetic happy little boy I have ever been a...
Pieced Together – A Mother’s Story
by AN ANONYMOUS BATTEN MOTHER I grew up in a family of story tellers. Every get together involved remi...
Defying Gravity by Joe Sikorra
Long time BBDF supporter, Joe Sikorra has published a book and dedicated a portion of the proceeds to BBD...
Be a Hero on Fox 7 Austin
An Austin 13-year-old is determined to find a cure for a rare & fatal disease in order to save his si...
FDA Meeting Update
In May BBDF had its first meeting with the FDA to get input and direction on our plan for clinical trials...
June Update – Only 6 months to go!
Only 6 months until we wrap up our first ever capital campaign to fund the treatment for juvenile Batten...
In the News!
2018 has been filled with fundraising, partnership and advocacy here at BBDF. With that said we wanted to...