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

Wednesday August 25th Steve Hugunin’s hair line changed forever. Well maybe just for another 30 days! He participated with MyDunkTank.com in raising money for the Niemann-Pick Children’s Fund in honor of my two sons Brisan and Parker Stults. He had two weeks to accomplish his mission. The dares were to shave his head, dress up in a DealBug.com costume for a month, and the other was to go skydiving because he is afraid of heights.

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

Need Your Vote. 30 Under 30 Event

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. Read More

37th Annual Hospital Hill Run

On June 5, 2010 Children’s Mercy Hospital had their 37th annual Hospital Hill Run that bears a lot of legacy in it’s longevity and fundraising for CMH!

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.