Book: We The Scientist: How A Daring Team of Parents and Doctors Forged A New Path For Medicine
Author: Amy Dockser Marcus
This is my 24th read for the year
This is the story of how a group of parents - whose children were diagnosed with a fatal disease called Neimann Pick Type C - encouraged scientist to collaborate with them to find a cure for their children. Scientist - who normally are tight lipped about their experiments and work - chose to work with parents to try a save the lives of these childrens. Thus leading to the first "citizen scientists" that paved the way for other parent groups to collaborate with scientist on othe diseases. While the cure for NPC has still not been found - the work of the parents along side of the scientist made progress that might not have otherwise been made if they did not work together pulling their resources and research toward one goal.
This was a good book. I love a good non-fiction and one that has patient stories are among my favorites. My husband has done with with NPC and we are very familiar with the rare disease world with our daughter having one of those rare diseases herself. Our own foundation has been working closely with scientist on our daughter's disease for the last decade and we are grateful that the scientist in our case are so willing to work with us to find a cure.
Well written, well researched and heart wrenching, this book is worth a read. The stories of these families are tragic. Children with NPC live around a maximum of 20 years, and most of those years are spent severely disabled. Children who are born normally quickly start to lose function in their early years and their parents watch them wither away for years. The work that these parents and researchers are doing to save these children is harrowing.