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

Promising Therapies for Niemann-Pick Type C Disease

In Rockville, MD on June 3-4th many of the researchers looking into different areas and avenues for Niemann-Pick Type C came together to discuss promising therapies. Although research is making progress, parents of NPC patients never feel that research is happening fast enough. That is greatly to be expected. The NPC community is  making large strides in the right direction!

The National Niemann Pick Disease Foundation was very kind in putting together a recap of that meeting in a pdf format which is viewable here: Promising Therapies for Niemann-Pick Type C Disease.