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.
Niemann-Pick Children’s Fund was featured on Mashable.com through Palm Connections. This is huge because literally thousands upon thousands aggregate news and read these publications. A few months back I ran across an opportunity on Facebook to submit an application to be apart of Palm Connections. They wanted to utilize technology and good causes in conjunction with one another to share with the world. I thought as I filled out that application there is no way out of thousands of applications we would be selected. 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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