by siteadmin | Aug 8, 2023 | Uncategorized
OPTN has teamed up with an inspirational 16-year-old New Hampshire entrepreneur. Anna is a local artist and a sophomore high school student. As a young girl she began to design these gorgeous delicate origami cranes of hope in honor of her grandfather who was battling...
by siteadmin | Aug 8, 2023 | Uncategorized
FDA APPROVES first treatment for a form of Batten disease The U.S. Food and Drug Administration today approved Brineura (cerliponase alfa) as a treatment for a specific form of Batten disease. Brineura is the first FDA-approved treatment to slow loss of walking...
by siteadmin | Aug 8, 2023 | Uncategorized
This video is for the families that are going through their own trials. All the trials are similar to the one we went through with...
by siteadmin | Aug 7, 2023 | Uncategorized
View our Newsletter from the previous...
by siteadmin | Aug 7, 2023 | Uncategorized
This will be our 9th year hosting the Nicholas Giving Tree Project- Holiday care packages for children with Batten Disease in the US. In the past we have mailed out between 50-75 holiday care packages. We hope this gives these families a small amount of joy during a...
