Hockey Fights for Caleb and NPC

Our son, Caleb, has Niemann-Pick Type C (NPC), a rare genetic metabolic disorder that is always fatal. The disease is so rare there are only 500 reported cases worldwide. Symptoms of NPC occur because of a defect in the intracellular transport of cholesterol, which results in abnormal amounts of cholesterol and lipid accumulating in various organs, spleen, liver and brain. NPC affects mostly children who often die before the age of 10 or within 5-10 years of diagnosis. Caleb is in the early stage with symptoms that include an enlarged spleen and liver, and clumsiness. It is a devastating disease that robs NPC children of their ability to walk, talk, and swallow, eventually requiring a feeding tube. Seizures are common with a progressive neurological decline that robs children of the ability to recognize their parents and then steals their lives. NPC has been labeled the childhood Alzheimer Disease, due to similar neurofibrillary tangle formation, and lysosome system dysfunction. There is no cure for NPC and the only treaments available are experimental at this time. 

We are putting on a Hockey-thon on Saturday, April 4th to raise money for the National Niemann-Pick Disease Foundation (NNPDF). This foundation funds research for the Niemann Pick Disease as well as support patients and families through their difficult journey. The event will feature 12 one hour ice hockey games at The Gardens Ice House in Laurel, MD. The money raised here will cover base costs so team fees and donations collected at the event will be directly donated to the NNPDF.