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...
by siteadmin | Aug 7, 2023 | Uncategorized
Thank you to our sponsors for this race. Congress Asset Management of Boston, Superior Plumbing of MA, Russell’s Garden Center, Paul and MaryAnn McLaughlin Family Foundation, Merrifield Garden and Design, Castlemeghan Concepts, Tuna Landscaping, Stop and Shop of...
by siteadmin | Aug 7, 2023 | Uncategorized
BDSRA Batten Disease Family Support Conference 2018 Nashville Tennessee. Thank you to our donors, sponsors, volunteers at our events, OPTN supporters, volunteers at the BDSRA in the affected kids room, our friends and our family who supported us to make this affected...
