A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, December 14, 2013

How A Clinical Trial Really Looks

Last year in Nashville, the first family we met was the Papier's: mom Darrile, dad Mark and son Dillon.

Dillon reminded us of Dan, even though he was a few years older.  We spent some time talking with them and I spent some additional time with Darrile at the NNPDF meetings.

Shortly after the conference, I found this article about Dillon:


Last month I posted the Wall Street Journal Article about how  long it has taken to bring a potential treatment through the research to clinical trial.  Part of that article had a video of Dillon:

Dillon has recently been re-enrolled in the cyclodextrin clinical trial.  Amy Markus, the Wall Street Journal reporter, has followed Dillon as he continues on his journey: 



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