October 11, 2011

Hope, Courage, and Strength


We want to Thank all our friends and family for your support for the 2nd Annual Walk for Wishes! 25 people came out to walk with the Walkin' 4 Tylor team and many more dontated so more wishes can be granted in Iowa!

The walked got started with a few words from the wish granters with the Make A Wish foundation, I talked about Tylor's wish to meet Brett Favre, we had a moment of silence for those who have passed, and a balloon release for HOPE.

It was a great day for a walk and the 2nd Annual Walk for Wishes rasied over $28,000! Thank you again for all the support.

Liv had to walk back with Big Brother Ty

Drew was tired....so Ty gave him a ride

Walkin' 4 Tylor 2011

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 1, 2011

Niemann Pick Awareness Month

Okay everyone today is the first day of Niemann Pick Awareness Month and I need your help!!! I need 11 people to donate $11 each! This is a challenge the foundation came up with. It is so simple and is a great way to raise alot of money!!

We received the news in July 2008 that Tylor has Niemann Pick Type C and every since we have been very active in the Niemann Pick community to help raise money for research. We have had great support from our family, friends and community and we Thank You for that from the bottom of our hearts.

I know there are always fundraisers going on and thounsands of groups to support but $11 isn't much and it will make a huge impact!! Please if you are interested in helping contact me at Rjenw97@aol.com or send your donation to 1825 Garfield Ave, Dubuque, IA 52001. Please make the checks out to NNPDF.

Thank you again for all the support and stay tunes this month I will be posting about other children affected by this horrible disease.

Coins for Comments

Today marks the first day of National Niemann Pick Disease Awareness Month and Jill, Tylor's stepmom, has come up with a great way to donate some money to the foundation, Coins for Comments. They have a blog for him also and if you make comments through out the month of October money will be donated to NNPDF. Please check it out and make some comments....Tylor loves to hear what everyone has to say. Plus you will get to see what he is up to at his Dad's house and meet his sisters and brothers!!

Time with Ty

Thank you for your support and love!