View Photo Gallery

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!

Related posts:

1. Vegas in Kansas City Casino Night Fundraiser 11-11-11
2. Matthew Lesko in Town For Vegas Casino Night
3. UPDATE 2-US FDA panel backs new use for Actelion drug [Zavesca]

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

Related posts:

1. Vegas in Kansas City Casino Night Fundraiser 11-11-11
2. FDA says Hold Off on Zavesca (Miglustat) approval.
3. Midwest Classic Tickets fore Charity Event

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.

No related posts.

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.

No related posts.