Niemann-Pick Children’s Fund, Inc is proud to announce our partnership with the Midwest Classic’s Mr. Goodcents TICKETSFore CHARITY™ program. The Midwest Classic is a professional golf event on the PGA TOUR’s 2011Nationwide Tour schedule. It will be held in Overland Park, KS at The Nicklaus Golf Club at Lions Gate from August 15 – 21, 2011. Through the Mr. Goodcents TICKETS Fore CHARITY™ program the MidwestClassic will donate 100% of all ticket sales to local charities including the Niemann-Pick Children’s Fund, Inc. Please help support our mission by purchasing your tournament tickets online or by filling out the enclosed orderform (include form in newsletter if you like). If you purchase your tickets online, please be sure toselect Niemann-Pick Children’s Fund, Inc from the drop-down menu so that we will receive 100% of the ticket sale. Continue Reading
One thing that I’ve personally learned is not to get excited about many things when it comes to research for Niemann-Pick Type C. The job of PR firms and Press Releases are to generate buzz, hype, excitement, and positive feelings. Sometimes there are a lot of finite details that cannot be written in a 500 word document. It would be like your best friend calling you up saying that they wanted to pop by to show you their new business only to find out it is a MLM and he/she has been involved for 60 days without producing a dime. Oh and you need to purchase $1000 worth of product to join. Show me the concrete and I might consider some of my feelings.
Niemann-Pick Children’s Fund, Inc. was organized in December of 2008 in order to raise awareness of Niemann-Pick Disease Type C and its affect on families in America; to raise money to promote research to find treatments or a cure for Niemann-Pick Disease Type C: and to provide support to individuals and families affected by this disease through existing channels.
Michael and Jennifer Stults who’s two eldest son’s Brisan and Parker were diagnosed with this rare neurodegenerative disease in August/September 2008 after years of aggravating doctor’s visits trying to understand what is wrong with their children, organized the Niemann-Pick Children’s Fund, Inc. Continue Reading
Rare Disease Day 2011
Definition of Rare Disease: “A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.” (wikipedia)
After all why would we refer to “rare disease” as rare when in fact we all are affected by disease? At some point in our life we have heard of someone or even have known a person who has suffered with a rare disease. To put into perspective what a rare disease means here are some statistics from WrongDiagnosis.com:
Prevalance of Rare diseases: about 25 million Americans (ORD); each disease less than 200,000 Americans by definition.
Prevalance Rate: approx 1 in 10 or 9.19% or 25 million people in USA [about data]
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