Newborn screening has the ability to impact patients BEFORE the disease manifests.
My son Noah was diagnosed in 2009 with CLN2 Batten disease after an 18-month diagnostic journey. My Daughter Laine was diagnosed a few months later. No treatment was available back in 2009, but that has changed and there is now an FDA-approved therapy which dramatically impacts patients. What has not changed is the rapid neurological decline experienced without treatment. Newborn screening has the ability to impact patients BEFORE the disease manifests. I want all CLN2 Batten children to be diagnosed at birth, so these children can access therapy before it is too late.
