Matthew Lesko who is TV’s best known personality who genuinely seeks to educate the American pubic about available grant opportunities, will be attending our Vegas Casino night on November 11, 2011 at the Hilliard Art Gallery. You may best know him as providing detailed information on how to apply for government grants that most people are unaware of due to the lack of publicity.
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Gavin and His Mother’s Heartbreaking Story
Kristen and Fernando Lopez have 3 children from Little Elm, Texas. Gavin there oldest son has Niemann-Pick Type C disease. Recently they were on the TV show The Doctors talking about their guilt about having a child with Niemann-Pick Type C. This is very normal to have these feelings because we as parents love our children so much that we want to fix them even with a rare disease. The show was focusing around Overcoming Guilt. Continue Reading
October is Niemann-Pick Disease awareness month! Just wanted to pass along what many of you might be aware of if your connected in the NPC community. The below is directly from NNPDF’s site.
Please participate on 10-10-10 for a $10 donation online to the NNPDF. They are truly doing some great things and we are thankful to be able to have them around.
Take the NPD 10 – 10 – 10 Challenge!
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Actelion Pharmaceuticals LTD produced a short video on two families and how Niemann-Pick Type C Disease has impacted their lives. Hollie Carter and Annie Pyne are featured in this video. They both are youngsters living with this disease. At first sight we all instantly start to evaluate what someone with Niemann-Pick Type C looks like or any other debilitating disease. The important feature to note is this disease can strike at any time. Some look completely “OK” and others you can tell something just isn’t right by their actions. Either way this horrible disease claims their life in it’s unrelenting attack on the nervous system.
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. Continue Reading
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