Chase the Cure, Inc.
a 501c3 Nonprofit working to get treatments out of the labs and into this generation of NPC patients
The Real NPC
On July 5, 2016 young adult author Lara Avery published a fiction novel called The Memory Book. Previews were published on line and many members of our Niemann Pick Community eagerly awaited the publication, very surprised someone would tell "our story." Prior to the books release CTC Board members Debbie and Shannon reached out to the author to discuss a negative response to the first chapter available on line. The author, Lara Avery and her editor Annie Stone sent us advanced copies for review.
It's a lovely, emotional read. It allows you to dive in and escape your housework, let your mind relax and focus on angst that is not your own. It delivers in that regard. The Memory Book will start discussions about NPC and they are our stories to tell. The author has invited us to do that from the beginning and has hosted a tumblr blog that she is linking to in her novel.
Please take some time to experience the Real NPC with these real families.