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Top News Story
A huge huddle was made in NPC research a couple of weeks ago. Please visit Eye on NPC to read how Chris and Hugh Hempel made NPC research history.
Did you know that NPC is one of the top rare diseases that is being researched by scientists today? NPC has had so much attention that it has become a mission for scientists to find a cure for this disease. Which is great news for NPC families; it gives us hope, strength, & courage to continue the fight against this devastating disease...WE WILL PERSEVERE!!!
Visit Eye on NPC to learn more
We have added a guestbook page to our website. We would love to hear from other Niemann Pick families, families who are struggling with other rare diseases, loyal readers, friends, and family!! Without supporting each other...rare diseases would take more than just our kid’s lives it would take away the strength to get through the little time we have to spend with them.
| (a Greek symbol for Strength)
Visit our Guestbook to share your thoughts
2010 Events in Honor of Tylor
Saturday, July 17th - Bruiser Football Game
Dubuque Bruisers
The night was very humid but Tylor had so much fun!! Kirsten did great singing the National Anthem, Tylor was names honorary captain, and the Bruisers won!!
GO BRUISERS!!
Checkout Fight 4 Tylor blog
to see pictures from the game.
Sunday, July 25th - Saturday, July 31st - RAGBRAI
This year for RAGBRAI there is a team riding for Tylor, Ride4Tylor! Janelle and Clay Wilwert along with other friends decided this would be a great way to raise awareness for Tylor's fight with NPC. We are so proud of them for taking on this challenge in honor of Tylor. If you can join them in Dubuque on July 31st to see the Ride4Tylor team dip their rear tires in the Mississippi that would make this ride even better! Please visit the RAGBRAI website for more details.
2010 RAGBRAI was a success visit Fight 4 Tylor blog to see pictures
Saturday, August 14th - 1st ANNUAL RYDE 4 TYLOR
Knicker's run in honor of Tylor. Motorcycles, cars, and trucks are invited to travel through the Tri-State to raise money for Tylor and NPC while enjoying a day with great friends.
Ride leaving Knicker's Noon sharp!
$10 per person...ride bracelet gets you in the door for the band
Non riders $5 cover for band
1st Stop - Cascade, IA "The Bent Rim"
2nd Stop - Zwingle, IA "The County Line"
3rd Stop - Andrew, IA "Zipps"
4th Stop - Bellevue, IA "The Frontier"
Last Stop - Dubuque, IA "Knicker's"
We will be selling koozies and 50/50 throughout the day
There will be chances to win Cannon 66 Run books
Dinner will be walking tacos served from 6pm to 7:30pm
$3 donation
"RUKUS" will start at 8pm to Midnight
Ryde 4 Tylor pictures and more on Fight 4 Tylor blog
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Fight4Tylor Blog-NEW blog
Fight4Tylor Blog-original blog |
Find out what is new in Ty's life. See what he is up to in school, how therapy is going, trips his has been on, doctor appointments, and the struggles we face on our journey with him.   |
A tribuate to Collin Raye's 9 year old Granddaughter, Haley, who passed
away April 3th, 2010 from a rare brain disease. This is the most beautiful
song I have ever heard.
Another song from Collin Raye! This song really touched me. This is how
we live each day with Tylor...we will never quit fighting for his life. |
