Our Mission: Advancing Treatments for CLN4
Hope 4 Batten Foundation is a nonprofit dedicated to advancing research and clinical trials for CLN4 Batten disease, an ultra-rare neurological disorder caused by a variant in the DNAJC5 gene. There is currently no approved treatment to slow or stop its progression.
We fund promising research, including an individualized ASO (antisense oligo nucleotide)
Happiness cannot be pursued; it must ensue.
OUR STORY
One Family. Two Generations Facing CLN4.
When Alison was diagnosed with CLN4 Batten disease in 2024, her mother, Barb LaBarge, was facing a disease she already knew too well. Alison’s father, Dennis, had been diagnosed with the same rare disorder in 1990.
Seeing CLN4 affect a second generation led Barb and Alison’s husband, Nick Brown, to look closely at emerging genetic research and what it could mean for families like theirs. In 2026, they founded Hope 4 Batten Foundation to help fund that research and the search for effective treatments.
Because CLN4 is inherited in a dominant pattern, it can pass from one generation to the next
From One Family’s Diagnosis to a Shared Mission
Working alongside researchers, clinicians, families and supporters, Hope 4 Batten Foundation focuses its efforts where they can make the greatest difference for people living with CLN4.
