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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.

No related posts.

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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Niemann-Pick Type C disease (NPC) doesn’t send Christmas cards, celebrate birthdays, love you unconditionally nor does it bother to hold back in it’s relentless attack on the bodies neurological mainframe. Can affected individuals live past their teenage years? Well sure…anything is possible. The cold truth is the earlier neurological symptoms present and accelerate, the increased likely hood that patients will have a shorten outcome of life. Very sad realization to come to. No survivor stories yet; it’s fatal. Your help could change that.

[ Video link: http://bit.ly/egmBKX ]

As your watching the video please think of creative ways you can help spread the message. It might not be monetarily but it could be through other random acts of kindness. Keep in mind that Niemann-Pick Type C holds a lot of valuable information that could unlock doors to other common diseases that are cholesterol related.

Thank you for taking time to read this post and watching our video.

You can find us on Facebook: Niemann-Pick Children’s Fund

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On July 30th I received an email back:

“Your story would be great for this. It’s unfortunate, and I’d hope that in telling the story there’d be some uplifting successes along the way, but it would certainly be a good cause for raising awareness. Basically this program is all about showing people doing good things, inspiring things, ambitious things…and how Palm can help do more by being better connected.”

We were elated that we had this opportunity! In conjunction we started our Facebook Page for the NPCF. We already had a “Cause” page but Palm wanted us to have more of a hub for information and sharing. You can visit our Facebook Page here and Like it : Niemann-Pick Children’s Fund.

Niemann-Pick Type C Disease is a rare neurological disease that affects very few. Maybe 75 in the United States currently. To put  into perspective there are well over 300 million people here in the United States. To say this disease is “rare” is an under statment.

With no cure or effective treatment as of today, this disease will claim the lives of mainly children and a handful of young adults. NPC stems from chromosome 18 where each patient has two mutated genes. One inherited from each parent. Those chances are one out of four with each pregnancy. Most carries of this gene are unaware and most medical professionals are equally unaware because of the “rareness” of NPC.

The core issue is the cells inability to metabolize cholesterol. To put it simply, something in the “recycling factory” of the cell malfunctions.  This is the good cholesterol your body needs to live. It is essential to everyone reading this post. You and I have the same gene (maybe not mutated).

Through this experience we will be sharing photos, videos, links, and posts with our Palm Phones. Our overall goal is to raise awareness. October is Niemann-Pick Disease Awareness month.

Read the full article here:  Palm Gives 500 Pre Plus Phones to Good Causes

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Please participate on 10-10-10 for a $10 donation online to the NNPDF. They are truly doing some great things and we are thankful to be able to have them around.

Take the NPD 10 – 10 – 10  Challenge!
Please Help Raise Awareness for Niemann-Pick Disease

Intriguing dates such as 10/10/10 don’t come around all that often, and it seems fitting to proactively observe this once-in-a-lifetime occasion, especially since it falls during

October National Niemann-Pick Disease Awareness Month!

Participating in the NNPDF Central Office Challenge and showing support for the many families coping with Niemann-Pick Disease is one simple way you can mark the day by making a positive difference.   With just a few minutes of your time, you can help raise awareness and funding for all whose lives are affected and cut short by Niemann-Pick Disease.

Our 10-10-10 Challenge is to get 300 people to share information about Niemann-Pick Disease with 10 other people, via email, Facebook, Twitter, or other means (even via the hospitable old-fashioned way, face-to-face!).

Spreading the word about this rare disease is key to raising the essential funding for research which will find the treatments and cure we all work fervently toward, and to providing important family services for those who rely on us.

Here are some simple ways you can help families affected by Niemann-Pick Disease on 10-10-10:

1. Create awareness of NPD by forwarding this message to 10 (or more) people in your email address book.
2. Post this message (or your own message about Niemann-Pick Disease) to your Facebook page or blog.  Post a link to the NPD Awareness Facebook page (click the Facebook icon on the NNPDF Home page at www.nnpdf.org).
3. “Tweet” about NPD and share the NNPDF Web site address:  www.nnpdf.org
4. Take a group of friends out for coffee or dessert.  Tell them about NPD and the devastating effect it has on families.  (We will be happy to supply newly updated brochures for your use, just contact us.)
5. Donate $10 for NPD on 10-10-10 and encourage your friends and family to do the same.  Most of us spend at least $10 a week on discretionary items (snacks, soda, a movie, fast food).  Ten dollars doesn’t seem like a whole lot of money, but when many people each give ten bucks, it adds up!  Donations may be mailed to the address above, or made online via our Web site:  www.nnpdf.org.
6. Encourage 10 contacts to check out our NNPDF October Awareness Online Auction!  Bid high, bid often!  http://www.biddingforgood.com/nnpdf/2010
7. Get a “leg up” on your holiday shopping by purchasing ten of the darling new 2011 Puppies Calendars, “Treasuring Each Day.”  These calendars raise funds for the NNPDF’s essential research program and important Family Support Services.  For more details and to order, click here.

Thank you very much for your help and continued generosity, on 10-10-10 and always!
Those who live with the challenges of Niemann-Pick Disease need and truly appreciate your kindness and support, today and until the cure is found.  Together, we will Persevere in Our Quest for a Cure!

Together, we can make a difference!

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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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In January of 1983, the Orphan Drug Act (ODA) was passed into law in the United States with consistent pursuit by the National Organization for Rare Disorders. The ideal behind this is to encourage pharmaceutical companies to look into smaller markets with development of drugs for orphan diseases. Niemann-Pick Type C (NPC) certainly falls into this category (around than 500 diagnosed ever worldwide). The benchmark on how to determine an orphan disease is one that affects less than 200,000 people.

As Nadine Hill, director of family services of the National Niemann Pick Disease Foundation (NNPDF) stated in an email to families this week, “What exactly does that mean for our NPD community? It is important to emphasize that an Orphan designation does not make any assessment at all on how the drug works in clinical trials, whether it is safe or effective in patients, nor whether it will ever be commercially available – the Orphan designation’s main purpose is to make the development of the drug more financially viable for the developer.”

Chemical structure of the three main types of cyclodextrins.

Cyclodextrins are a sugar compound which was first described in 1891 by A. Villiers. Currently the food industry uses cycodextrins in preparing cholesterol free products. The concept is to help reduce the intercellular cholesterol that becomes the main culprit in NPC. By reducing the size of the lysosomes and in theory reducing cholesterol, it can help prolong the life of a child or adult suffering from the death sentence of NPC. Although there currently is no formal clinical trial, these actions are a step in the right direction. There still is a lot of unknowns and work that will need to take place.

Behind the push to get to this point is Chris & Hugh Hempel who has twin daughters suffering from NPC. In conjunction with other NPC families they formed their own Virtual BioTech they named S.O.A.R. (Support of Accelerated Research). Through the work of much collaboration, this has shown to help move research quicker.

As of today there is no known cure or effective treatment for Niemann-Pick Type C. The future outcome looks bright even though time is not on our side. The Niemann-Pick Children’s Fund looks to provide support in the areas of research, education/awareness, and family support through existing channels.

Read the WSJ.com story here: FDA Grants Mom’s Wish; Gives Orphan Drug Designation

To learn more please visit NNPDF’s website: http://www.nnpdf.org/Cyclodextrin.html

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