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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. šŸ™‚

11-11-11 Challenge


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.

Ā 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

Ā Donate $11 Here

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 theĀ 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 »

National Niemann Pick Disease Family and Medical Conference 2011

The Conference

This year on July 28-30th the National Niemann Pick Disease Foundation (NNPDF) held their 19th annual Family and Medical Conference in Norfolk, VA. It was a great location in a naval town right on the bay! Me and Jennifer were able to attend for the first time since we learned of Brisan and Parker's diagnoses in August of 2008.

Jennifer & Michael NNPDF 2011

Jennifer & Michael NNPDF 2011

The greatest benefit that we felt we received was the connection with other families putting that name with a face. Those are friendships that will run deep over a lifetime. As one parent who lost their daughter in March of this year said, “None of us in this room ever wanted to sign up to be in this club”. He said that exactly on the button!

Meeting other kids and a few young adults with Niemann-Pick Type C, A & B, we felt some positiveness and some negativity in the room. Honestly not everyone is able to be chipper 24/7. We were able to see first hand what different stages of NPC looked like. It kind of gave you an idea of what things may look as things progress more. It is so very true that you can not compare two kids the same age. The disease manifests itself so much differently which is the frustrating part for researchers and parents afflicted by this horrible disease.

Niemann-Pick Research

Another benefit was listing to an array of doctors/ researchers such as Dr. Marc Patterson, Dr. F. Denny Porter, Dr. Dan Ory, Dr. Fran Platt, Dr. Steven Walkeley, and a few more talk about different areas they are researching but more importantly the collaboration they all partaking in.

An upcoming beginning trial of Cyclodextrin in 2012 at the NIH is in the works of coming to life. Some of you reading this have heard about this sugar compound that has shown great use of removing cholesterol out of the cell. Albeit they don't fully understand why it does that, this could be a good insight into Niemann-Pick Type C as a whole. Dr. Porter carefully went over how they planned to administer Cyclodextrin and cautioned us that there are unknowns that can pop up during this beginning phases of an official trial.

The Families

The families that attended were beyond wonderful people. Having NPC, NPA or NPB is not a disease that you would pick if you had to pick one.. you know? There are some immaculate people that showed immense courage to be there, wake up every day to love their loved one, and show they are not going to let this death sentence ruin our time here on earth!

Our hearts go out to everyone we met affected by Niemann-Pick Disease. The reality of it all is extremely sad and brutal on your emotions.

Here are some pictures we took while there: [ ]

Brisan Graduates Kindergarten!

On May 27, 2011 Brisan Stults graduated Kindergarten! He wasn't too happy as you can tell because he wanted to stay in his chair. Kate his trustee sidekick and nurse…mainly his buddy wanted him to walk in with his class. The backpack he is wearing has his feed supplies and pump because he was in a middle of getting some food in his belly. Below is the video of his graduation and a few parts from the class ceremony.
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Parker Graduates Preschool

On May 20th Parker graduated Early Childhood or better known as Preschool! He was the only one to graduate out of his class this year. We are very proud of him and it is also a sad moment because the teachers have seen Parker and Brisan both grow up in their classrooms. He is such a cutie and he diffidently earns his nickname “stinky”. I purposely put him in his shirt that has Charlie Brown on it saying ” I do my own stunts”. This is all very true. Brisan's graduation from Kindergarten will be this upcoming Friday.
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Dude Wheres My Hat

It's been busy in the Stults household. To say the least that is. Well heck…when isn't it? We found out that Duncan was accepted as a peer model for Early Childhood at the Grain Valley School District a few weeks back. That is so exciting for him! He really has been urning to play with his “friends” he calls them.

Mr. Parker and Mr. Brisan have been playing “who can throw up the most” game. It must be some weird college game or something. Maybe it was from watching Americas Next Top Model? (It's ok to laugh at my silliness). All the vomiting has thrown a damper into pretty much life. That would mean changing feeding schedules, school, and etc. As of the time I write this post it has settled a tad down.
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