Niemann-Pick Disease Conference
On July 28th-30st the National Niemann-Pick Disease Foundation held their 19th annual Medical & Family Conference. It was a place where families who didn’t sign up to be in “the club” of Niemann-Pick Disease Types A, B, C gathered to connect with families and meet the some of the researchers involved in finding a potential cure. The conference was held in the great area of Norfolk, VA right on the bay!
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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.
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]
This year we are preparing a video series with our partnership with Cisco, the makers of the Flip Camcorder . Over the next few months we will be reaching out to families affected by Niemann-Pick Type C and Niemann-Pick disease as a whole and will be taking applications for the program.
Having a horrible disease such as Niemann-Pick Disease, families are limited with the amount of time they have with each loved one. Now this can vary between Types A, B, C/D but the overall feeling is you as a loving parent would like to capture memories that can last forever. The reason we will take applications is we will be giving each applicant (we are still determining how many Flip’s we will give away) the Flip Camcorder to record their memories. In exchange for the Flip Camcorder we will ask that you share some video/ pictures with us for our awareness projects for Niemann-Pick Disease.
The Niemann-Pick Children’s Fund’s whole goal besides helping raise money for research and etc is to bring awareness to this rare fatal disease. One of our recent videos we put together netted us from social sharing online a large donation. We hope over the course of the year coupled with several video projects that we can help bring money into the disease to be used effectively. We are all in this together no matter what the name of the organization is.
If you are a parent of an affected individual please contact us at info @ npcfund . org. We will be working on completing the application form online shortly.
Check out our resources page for additional websites regarding Niemann-Pick Disease. Go here for additional information about Niemann-Pick Type C disease.
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