Michael & Jennifer Stults 1-3-10

I’m very honored that me and my wife have been selected as one of the 30 people under the age of 30 who have contributed to our community in some manor. Although we feel we have a ton of work to accomplish, the Niemann-Pick Children’s Fund, Inc is dear to our heart. Our two oldest son’s Brisan and Parker Stults were diagnosed with a rare FATAL neurological disease called Niemann-Pick Type C Disease. Sometimes referred to as the “Childhood Alzheimer’s” because of the similar pathological features they share. They only have a childhood to live a lifetime.

Brisan and Parker heading to Disney World June 2009

Roughly 75 patients in the US currently and only 500 cases diagnosed worldwide EVER. This is a genetic disease on Chromosome 18. You get a Gene from your mommy and daddy. We each passed  a bad copy of our Gene which activates this horrible disease. The statistical odds of this situation coming to fruition is beyond comprehension.  In NPC it is the cells inability to metabolize cholesterol. Essentially the recycling factor breaks down and this good cholesterol your body needs to form cells ends up becoming the culprit. It stores all these fatty lipids in the Brian, Liver, Spleen, and Bone Marrow causing a domino affect of neurological problems that eventually leads to their premature death.

Currently there is no cure or effective treatment to date. With the help of showing the correlation with other common diseases like Arteriosclerosis, Stroke, Adult Onset Alzheimer’s, and even HIV/ Aids we can attract more researchers from these more profitable diseases into our tiny world. As many of you know most pharmaceutical companies wouldn’t want to invest in a small population that isn’t going to return their investment from the labs. It’s just a stark reality and capitalism.

VOTE ONLINE HERE  [ a $10 donation is required but…it ALL goes to Charity!

VOTE ONLINE HERE  [ a $10 donation is required but…it ALL goes to Charity!

We’re asking that you come out and support us. Tickets will be sold online at 30 Under Thirty or by visiting their website: http://www.connectinkc.com/Our%20Events and click on “Register” on this event. On September 10th, 2010 they we will recognize the candidates and their contributions to Kansas City. The event will be held at LUNA7pm-11pm. (www.lunakc.com) 1520 Grand Blvd Kansas City, Mo 64108. On this evening come out and vote for your favorite candidate (Hoping that is us!), enjoy catered appetizers, great drink specials (Including an hour of sponsored drinks), and dance the night away. Raffles & Prizes included. The candidate with the most votes that evening will have the proceeds of the event donated to their favorite charity of choice!! from

Thank you for your support!

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1. UPDATE 2-US FDA panel backs new use for Actelion drug [Zavesca]

In comparison to Niemann-Pick Type C Disease (NPC), it has maybe less than a 100 people currently living in the U nited States. Many sources state that 500 cases have been diagnosed ever worldwide. That’s not exactly as common of disease as Alzheimer’s.  NPC is described as a genetic degenerative neurological  disorder that mostly strikes during childhood that stores fatty lipids in the brain, liver, spleen, and bone marrow because of the cells inability to metabolize cholesterol. Although uncommon, adult onset can take place with NPC. Outcome is also fatal with no cure.

Whether it is Niemann-Pick Type C Disease (NPC) or Alzheimer’s, they are extremely saddening to experience as a loved one. One affects mostly older adults and the other strikes predominantly in adolescents. Regardless, a main symptom in each disease is progressive Dementia along with similar pathological features that include the loss of intellectual function.

The question seems to arise often regarding why would you refer to Niemann-Pick Type C Disease (NPC) as the “Childhood Alzheimer’s” when they are technically two separate diseases? Touche’, great point Dr. Watson. My wife Jennifer absolutely hates when the two are referred to one another. I on the other hand am absolutely fine with the comparison and title.

When you tell someone about NPC, they kind of give you that “deer in the headlights” look along with the “side head nod” like a puppy. For any of you in sales or marketing the first thing you are taught is to make an impact statement to gain attention or some type of understanding of what your speaking about. When you say the “Childhood Alzheimer’s” people can instantly relate to someone or to a situation where they’ve heard about Alzheimer’s or Dementia.

Overall if you explain in a way tha t they are two separate diseases that share some similarities, you should be able to paint a mental picture for your audience. In no way do I feel by using this reference that it confuses nor threatens anyone. Just explaining what NPC is, is confusing enough. How can you make it any more confusing for people? Seriously.

You as a parent are the biggest advocate for your children. We need to let people know about this horrible disease. I believe it holds keys to other diseases affected by the storage of cholesterol in cells. Please visit our website www.NPCFund.org or my family’s personal page www.BriParDun.com.

Photo used under Creative Commons from Sharron Goodyear.

Related posts:

1. Dementia in Our Kids – The Uninvited Thief
2. Why Rare Diseases OUR Important
3. FDA says Hold Off on Zavesca (Miglustat) approval.