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.

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