The Noah’s Hope – Hope 4 Bridget family foundations have joined forces to collectively raise awareness and money for the treatment of Late Infantile Batten disease. Currently, there is no cure for the fatal, childhood disease.
The Van Houtans (Noah’s Hope) have two children who are affected; Laine age 10 and Noah~ an angel at age 11.The Kennicotts (Hope 4 Bridget) have a daughter who was affected by Batten disease. Bridget also became an angel at age 12.
We will always have hope for a cure. We will always have hope for our children.
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