We started this website in the hopes we could help spread the word about a very cruel disease that is killing our children called Niemann Pick Type C (NPC). Niemann Pick Type C is a neuro-degenerate disease which means a child with NPC progressively gets worse. It's a disease that strikes children through accumulation of excess fats in the cells of the liver, spleen and brain. Neurological problems worsen in time with NPC the child will lose coordination, stumble, fall, and eventually need a wheelchair, hospital bed and other adaptive equipment. As the disease progresses other symptoms begin to develop such as the lose of speech, the ability to swallow, and seizures may occur. The health of the child will continue to decline until the disease claims their life. There is no cure at this time for NPC.

WHAT'S NEW!!!

Top News Story
NIH working toward a Cyclodextrin trial. This is huge!! Of course this is not a for sure thing but there is definitely potential! Dr. Ory, Porter, Patterson, and Austin held a conference call on May 2nd to update the NPC community on research efforts and the Cyclodextrin trial. Stay tuned for more information. 


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!!!

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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. 
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               (a Greek symbol for Strength)
Visit our Guestbook to share your thoughts


2011 Events in Honor of Tylor

Sunday, July 24th - Saturday, July 30st  RAGBRAI
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. This year the ride starts in Glenwood, IA and ends in Davenport, IA. Please visit the RAGBRAI website for more details.  


Saturday, August 13th - 2nd Annual Ryde 4 Tylor

The 2nd Annual Ryde for Tylor is set to leave Knicker's on August 13th....more details to come...

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. scan0162DSC02197
















 

YouTube Video

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.
 

YouTube Video


 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.

 

 

 



 
 

Visit National Niemann Pick Disease Foundation website at nnpdf.org
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