A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Sunday, October 21, 2012

Research Foundations

October is Niemann Pick Disease Awareness Month.

Many reading this had never heard of Niemann Pick Disease before they met me or another family who has been affected.  Unfortunately that is the case with most rare diseases - they aren't well known.

October is also Breast Cancer Awareness Month.  Now, I'm not saying that breast cancer isn't important, because it is, but there is tons of money directed toward breast cancer research.

But what about research into rare diseases?  What about research into Niemann Pick Diseases?

There are several organizations that fund research into Niemann Pick Disease:

Dana's Angels Research Trust (DART):

Andrew and Dana
Andrew and Dana

"Dana’s Angels Research Trust (DART), a 501(c)(3) organization with strictly charitable purposes, was founded by Phil and Andrea Marella to fund medical research, medical education, or medical or hospital care for the treatment or cure of Niemann-Pick Type C disease (NPC) or other similar genetic diseases.

From the age of five, it was apparent that the Marella’s daughter Dana, a happy, caring and energetic child, had visual and learning difficulties. Since that time, Dana’s visual and cognitive abilities, and her balance have become progressively worse.

After years of searching for answers to her challenges, Dana was diagnosed in 2002 at the age of eight with NPC, a genetic disorder that prohibits the metabolism of cholesterol and other lipids. In 2004, at the age of 5, Dana’s brother Andrew, the Marella’s 4th child, was also diagnosed with NPC.
DART aims to help all of those (adults and children) suffering from the disease of NPC. Our efforts may also help millions of people suffering from heart disease, strokes, Alzheimer’s disease and other disorders that appear to be related to the metabolism of cholesterol."

The Ara Parseghian Medical Research 

The Ara Parseghian Medical Research Foundation is a grassroots, non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease and related neurodegenerative disorders.

The Foundation was founded in 1994 by Parseghian family members shortly after they learned that three of the four children of Mike and Cindy Parseghian were diagnosed with NP-C disease. The Foundation is named after Ara Parseghian, the legendary Notre Dame Football coach and the children’s grandfather.

The Ara Parseghian Medical Research Foundation was incorporated in the state of Arizona in October 1994 and received 501(c)(3) status in December 1994. 
 About APMRF

The Parseghian’s son, Michael, lost his battle with NP-C in 1997 at age 9. Christa passed away in October of 2001 at the age of 10. Marcia died in 2005 at the age of 16.
 As of January 2009, 25 medical research projects are being funded by the Foundation in the United States and throughout the world. Another 50 grants have been funded by the Parseghian Foundation in the past.

These two organizations sometimes join together with the National Niemann Pick Disease Foundation (NNPDF) to provide grants to the same research projects to further research to benefit these diseases and others.


Post a Comment

I love hearing from my readers. Please leave a comment to let me know you stopped by. :-)