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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.
Karen Quandt is the Board Chair for the NNPDF.org. A few years back she was completing a study about neurodegenerative disease in family members of patients with Niemann-Pick Type C (NPC). There differently is a relationship between NPC and other diseases. At this given time ,the current discoveries that scientists are making to further develop treatments for NPC are providing critical insights into our understanding relating to a few of the most common diseases that have been shown to be debilitating to life.
Thank you Karen for allowing us to share.
We have put together a short video of Brisan and Parker Stults to help raise awareness through social media outlets. The upcoming 2011 year should bring hopefully other insightful videos that can be shared with our friends, family, coworkers, and complete strangers. The whole object with any rare disease is to explain a message in the shortest amount of time to help create emotion. We all act upon our emotions and that has done an incredible amount of good in our society.
Brisan and Parker Stults are our two eldest sons’. In combination with Niemann-Pick Type C disease they also have an underlying Platelet Dysfunction Disorder that when they bleed they have a severe delayed clotting time. Essentially the clot won’t stick and creates a very time consuming situation to control. Typically in Niemann-Pick Type C (NPC) patients bleeding isn’t associated with the disease in this regard. It has been brought up as a concern with a handful of other affected families.
For Brisan and Parker the understanding is NPC is not the complete picture of the issue but is something additional that they have. Although patients with NPC suffer a great deal of loss and affects everything most people take for granted, they can still have additional issues on top of NPC.
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