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.
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.
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 LUNA from 7pm-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!!
Online Voting will be available for those who can not attend.
Thank you for your support!