(CS4U) About the boys disease Niemann-Pick Children's Fund, Inc | They Only Have a Childhood To Live a Lifetime

 

 

A friend of mine has twin grandson's with this terrible disease.  Please keep this family in prayer.  You never know who this may touch. Toward the bottom it has links that explain it. Toni   -------Original Message-------     Date: 1/22/2011 8:47:00 AM To: Undisclosed-Recipient:, Subject: Fw: Niemann-Pick Children's Fund, Inc | They Only Have a Childhood To Live a Lifetime   Thought you might like to see what Mike and Jennifer are heading up.....Maybe pass on to others and have them pass it on so we can reach anyone who may be affected....you never know when someone will be dealing with it. They are trying to raise awareness and fight Niemann Pick  with their Foundation.  Thank you so much,     ----- Original Message ----- From: Niemann-Pick Children's Fund, Inc   Subject: Niemann-Pick Children's Fund, Inc | They Only Have a Childhood To Live a Lifetime Niemann-Pick Children's Fund, Inc | They Only Have a Childhood To Live a Lifetime  Video Project for Niemann-Pick Disease 2011 Posted: 20 Jan 2011 03:26 PM PST 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. Email this to a friend?  What is Niemann-Pick Type C disease? Can you share? October is Niemann-Pick Disease Awareness Month 2010 New therapies – Niemann-Pick type C disease

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