After Participation
Clinical Trials: Our son is on the cutting edge. He IS the data. (CLN2 / Batten)
Parents of two sons, one of whom has CLN2 (Batten disease) and was one of the first children selected for a clinical trial, talk about what it means to be one of the first families in a clinical trial. “There are so many families that came before us, that made a sacrifice. We’re in unchartered territory now.”
1 / 9
Clinical Trials: Once treated the road ahead is unknown.
Clinical Trials: The pioneers and those who come after.
Clinical Trials: A mom: I didn’t worry about disease progression then and I don’t post trial.
Clinical Trials: You give up some control when your child is a data point.
Clinical Trials: Our son is on the cutting edge. He IS the data. (CLN2 / Batten)
Clinical Trials: Not everything is fixed. Outcome isn’t a ‘cure-all.’ (CLN2 / Batten)
Clinical Trials: Expectations – Holding on to Hope. (CLN2 / Batten)
Enzyme replacement therapy, Stem Cell Transplant, and Living into the Unknown