Posts Tagged ‘Parker Stults’

Vegas Casino Night Was A Blast

Last night, 11-11-11 we held our Vegas Casino Night. The evening was full of different casino games like craps, blackjack, texas hold'em, roulette, and much more. Matthew Lesko was a big hit and everyone wanted a picture with the famous Answer Man!

We held the event at the swanky Hilliard Art Gallery which provided a nice venue for this wonderful evening. The overall turnout was what we expected and the feedback was very positive. This certainly will give us a good building block for future events.

Christina Median of NBC Action news in Kansas City generously gave a portion on her evening to come down to the event. Here is the link for the newscast: Grain Valley family fights to find a cure for rare disease. We sincerely appreciate her and NBC for sharing airtime in helping us spread awareness of the event!

Should have pictures soon.

Thank you to everyone that helped spread the word and equally important, attended our event.

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Challenge: I need 11 Friends

October is amongst us already! Truly can't believe that time is flying by us.

October is the 10th annual national Niemann-Pick Disease awareness month. To help spark up and rally the troops the NNPDF has put together a “Challenge”. Niemann-Pick Type C disease is a extremly fatal disease with no positive outcome at this time so your help is greatly needed.

The Challenge:

The challenge is quite simple actually… Get 11 friends to donate just $11 dollars. Sorry to let you down as you were probably expecting something huge. 🙂

11-11-11 Challenge

Goal:

If the NNPDF can get 111 people to get 11 contacts to each donate $11 then that would be $13,000 that can be dedicated to research. Isn't very much is it? Think again… it all adds up.

 Donate $11 Here

Niemann-Pick Type C is a degenerative nuerological disease that is Fatal. It is the cells inability to metabollize cholesterol therefore causing a domino effect of nuerological problems until ultimately it claims their lives.

We ask for your support! Please share.

Brisan and Parker waiting on bus 2011

Brisan and Parker waiting on bus 2011

 Donate $11 Here

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How Niemann-Pick Type C disease Affects The Brain

The Doctors TV Show

The Doctors (2008 TV series)

Image via Wikipedia

Recently this week Kristen and Fernando Lopez attended a taping of the hit TV show's Season 4 premier called “The Doctor's”. There son Gavin has Niemann-Pick Type C disease like Brisan and Parker. We consider them good friends and are so very excited they were able to nab this opportunity. This was an awesome opportunity for our disease community to help spread awareness about this rare disease and hopefully attract the right people that help change the course of this. Below are a few videos from the show.

E.R. physician Dr. Travis Stork explains how Niemann-Pick Type C disease affects the brain. Read the rest of this entry »

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First Day Of School For Brisan, Parker, and Duncan

Brisan, Parker, and Duncan started school today! Although last night someone decided to sabotage half of the 46 school buses for the Grain Valley School District that prevented most of the students besides the special needs students to have bus transportation.

Brisan started 1st grade today! Parker started kindergarten and Duncan started as a peer model!

Here are some pictures to share with everyone:

Brisan and Parker waiting on bus 2011

Brisan and Parker waiting on bus 2011

Read the rest of this entry »

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Looking For A Registered Nurse

The last few weeks we have been searching for a full time registered nurse for Brisan and Parker. A long story short we decided to do away with our health aide and with that meant we had to find a new agency if we wanted to go with skilled nursing. Currently the agency that is assisting us has stated they have had trouble finding a person that would be willing to work the 1-9pm shift Monday through Friday. Read the rest of this entry »

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Parker’s Early Childhood Pictures

Just wanted to share these pictures that Mrs. Hall took of Parker and there are some of Brisan when they were in the same class for a time.


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