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). Continue Reading

How many times have you been looking for something at your house but you accidentally find something you previously were missing? Wouldn’t it be a shame if the prize you were seeking was within reach but you discounted that it could be that easy? What if understanding Niemann-Pick Type C disease opened up the door to help millions of Americans with other disorders involving cholesterol? Of course nothing in life is easy nor will it always be within reach. With being human comes the tendency to make oversights. Continue Reading

Social Security adds 38 new medical conditions that qualify for disability help.  The new conditions range from early-onset Alzheimer’s disease to rare diseases that primarily affect children which includes Niemann-Pick Type C!

Personally this seems like a relief for so many families. One of the goals of the Niemann-Pick Children’s Fund is how can we directly impact families especially with this kind of disease. That of course is a huge task that seems daunting at times. There are so many other rare diseases out there that are equally devastating besides NPC. It is heart wrenching to know that there are so few options. Continue Reading