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NBC Action News and Christina Medina were so very kind to come out to share a bit of our story with Kansas City. You can find the link below:

Grain Valley family fights to find a cure for rare disease

Matthew Lesko was a big hit and everyone loved his smiling personality! We appreciate you coming out Matthew!

Thank you to each and everyone of you for supporting us and our event whether that was donating an item, your time, or even just donating monetarily.

See you next time!

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Passion To Help

For well over 30 years, Matthew has been on a quest to educate the public. At times we may think he is over the top but he has went up and beyond what most of us would do to fulfill not only our passion but to get people to notice him. I have to say that is admiring. We face the same challenge with a disease like Niemann-Pick Type C. It is rare and not a lot of people are aware. So we need to bring awareness to the matter to further educate about this rare disease that could open the doors to other well known diseases that plague our society. Our Vegas Casino Night is one of our attempts to draw the Kansas City community into a night of fun but equally important generating knowledge to the public.

Matthew will be presenting attendees with his American Benefit Plan (Value of $350) as a courtesy gift. He truly likes to give back.

What is Niemann-Pick Type C?

Niemann-Pick Type C is a genetic disorder that affects the cells ability to metabolize cholesterol. It is extremely rare and consequently always fatal. Although the age of death varies, it generally strikes in adolescents and childhood. To learn more visit here: About Niemann-Pick Type C

PR release by Evans Media Group: http://www.npcfund.org/LeskoInTown

More Lesko: http://www.Lesko.com or http://questionmarkguy.blogspot.com/
Brisan and Parker: http://www.BriParDun.com

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The money raised from the Casino Night will help further the fight against a horrible fatal disease called Niemann-Pick Type C.  NPC is the cells inability to metabolize cholesterol that stores fatty lipids in the brain, liver, spleen, and bone marrow causing a domino effect of neurological problems that lead ultimately to their untimely death.  No cure. It’s a 100% FATAL.

With less than 50-75 cases currently in the United States, statistics state that there has only been 500 cases diagnosed worldwide EVER!

The importance of educating and creating awareness as much as possible is the insight it can bring to more common disorders like Stroke, Adult Onset Alzheimer’s, Atherosclerosis, and even HIV/Aids. Each of these disorders has a problem with cholesterol. We all know someone that has been affected by this haven’t you?

Tickets are for sell online at www.NPCFund.org/VegasNight. We have several options. General admission is $25. You get entry into the fundraiser, 1 drink ticket, 1 raffle ticket, and a 5,000 chip voucher to start having fun!  Tickets and sponsorships go up to $250 with different options.

You should expect at the event:

• Blackjack, Poker, Texas Holdem, Craps, Roulette, and a Money Wheel (Sponsored by FUN Midwest)
• Black tie affair (Over 21 yrs of age only)
• Hor d’ourves (Some nice stuff)
• DJ / Emcee (Bryan Truta – morning DJ on 105.1 JACK FM)
• Prizes, Raffles, and Silent Auction Items

Niemann-Pick Children’s Fund Inc. is a Missouri 501(c)3 non-profit EIN 80-0317862. Your donations are tax deductible under the IRS tax code. Please consult with a tax preparer to determine the eligibility.

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Below you can view our letter informing the public on the event or also print the order form if not ordering via www.NPCFund.org/MidwestClassic-Tickets
Midwest Classic Ticket Sales Aug 15-21 2011

Order Form | Midwest Classic Golf Tournament

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Well we all saw this one coming and how much he loves his hair. After the two week time period he was able to raise $1,061 for the NPCF. A very remarkable job he did! We are incredibly thankful for his actions and his caring sensitivity to Brisan and Parker’s condition.

Enjoy watching the video below while we shave it all off! Steve your a great guy and you have a heart of gold.

Niemann-Pick Type C Disease | MyDunkTank.com | Steve Hugunin Dare

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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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This year I decided that I wanted to participate in the run for Brisan and Parker but for future events of Rare Diseases. I had never done anything like this before and remember thinking when I woke up at 5:30am on that Saturday morning, that I have officially lost my mind! Originally with another friend we were going to run the 10k which is around 6.25 miles. Knowing that I haven’t ran that distance all at once since high school I decided to go with the 5k (3.25 miles).

My training wasn’t spectacular although I had regularly been working out at 24 hr Fitness. My last outside running in distances was in August/September of 2009. The tread mill came in handy but to all amazement I only ran 3 miles twice for my training.

On the day of the event I felt really good and finished strong for not knowing what to expect. My goal was not to finish in 1st place but to just finish. My body felt really good after the race.

Next year our goal is to have the Niemann-Pick Children’s Fund on their site as a non-profit that others can help raise money for. I noticed that they did not have any that were targeting rare diseases. This will be a great way to help spread the message in our community especially but help generate awareness & education.

Niemann-Pick Type C (NPC) is a rare fatal genetic neurological disease that affects the cell’s ability to metabolize cholesterol. The domino affects end up destroying the nervous system along with other vital bodily functions that ultimately claim the life of the patient.

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