After Participation
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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