What Matters Most-A book written by an NPC Mother.

Book about the Life of Chuck Beckman (NPC)

to Benefit NNPDF's Programs of Research

Released just in time for October Niemann-Pick Disease Awareness Month, What Matters Most: Living with the Young Adult Onset of Niemann-Pick Disease Type C (NPC) is a new book by Rozetta Beckman about her family's journey through Niemann-Pick Disease.

NPC took the life of Rozetta's son, Chuck, at the age of 36. He was diagnosed with NPC as a young adult, after symptoms began to surface when he was about 18 years old.

Proceeds from the book will be donated to the NNPDF for research into NPC.

To see a preview of the book and to place an order, visit:
Hardcover edition      Paperback (color)     Paperback (bl & wh)    Downloadable ebook

October Awareness Talks in Mount Pleasant, Iowa

Danny Clark (NPC)
10/17/79 - 4/8/98

Lisa Clark (NPC)
9/30/82 - 12/12/02

Howard and Susie Clark of Mount Pleasant, Iowa, will be making two presentations to raise awareness of Niemann-Pick Disease during October Awareness Month. Susie will first address her P.E.O. ladies group, and then the couple will be giving a talk to their Methodist Church group later in the month.

The Clarks lost both their children, Danny and Lisa, to Niemann-Pick Disease Type C. The photo above is one of their mom's favorites, taken on a family outing to see a hockey game in 1997. Susie writes about her children, " They were fabulous kids, and taught us so much about courage, strength, and acceptance."

Help spread the word!! October is Niemann Pick Awareness Month

October is Niemann Pick Awareness month and we are asking for your help to spread the word. Recently Actelion Pharmaceuticals LTD interviewed two families that struggle with NPC everyday. Actelioin Pharmaceuticals LTD has been working with the National Niemann Pick Disease Foundation to get FDA approval for Migulstat (Zavesca), the experimental drug Tylor is taking to help slow the progression of NPC.
This video shows how differently NPC effects each child. But most have the same horrible beginning....the time it takes to figure out what is going on with your child. This is where you can help! Spreading the word will make people more aware of NPC which in turn with help in raising money for research. There are great doctors and scientists working to find a cure for NPC but this all costs a tremendous amount of money. The NPC families contribute what they can but we need your help to save our kids lives. Please help by passing this on to family and friends and ask them to do the same.

Summary edit of the Hollie and Annie films from sue lowe on Vimeo.