The Noah’s Hope – Hope 4 Bridget family foundations have joined forces (est. 2014) to collectively raise awareness and money for the treatment of CLN2 (Late Infantile) Batten disease.
The VanHoutans (Noah’s Hope) have lost two children to CLN2 Batten disease; Noah, an angel at age 11 and Laine an angel at 12.
The Kennicotts (Hope 4 Bridget) have also lost their daughter at age 12.
Even though our children are no longer with us, we are committed to continuing our efforts to advocate, research, raise funds, and increase public awareness about CLN2 Batten disease in their memory.
We will always have hope for a cure.
Noah’s Hope – Hope 4 Bridget
The First Treatment for Batten disease Approved by FDA
For the first time ever, there is substantial HOPE for children affected by Batten disease. The FDA and the European Medicines Agency (EMA) have each approved the first-ever CLN2 Batten disease enzyme replacement therapy called “Brineura”. This is due to the efforts of these two family foundations, the BDSRA and our wonderful family and friends. We are grateful for the amazing support of everyone that has been involved since 2009. While this treatment is exciting news, your future support will allow us to continue searching for additional treatments and a CURE for CLN2 Batten disease.
Cerliponase Alfa for CLN2 Disease