This year is the National Niemann-Pick Disease Foundation’s 20th year of providing services to families affected by Niemann-Pick Disease, raising awareness, and the crucial part of funding for research.

This special occasion will be held in Nashville, Tennessee on August 16-19th! More details will develop here in the upcoming future on “the skinny”. Continue Reading

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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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.