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.

Friday, February 14, 2014

Rare Disease Month - Day 13

It's February.  That means it is time to focus on Rare Diseases.  You can read more about what I wrote about the past 2 years by clicking on the links to the right.

This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.

Today focuses on two brothers, Matt and Tim, in Australia.  A newspaper article from last year explains it all: http://www.mmg.com.au/local-news/benalla/bash-to-help-lads-1.30415


The Australian NPC Foundation is frantically trying to raise funds to keep mice alive and research moving forward.  If you can contribute in any way, even if it is just sharing this post, it would be appreciated.  More info on the research they are trying to fund is here: http://npcd.org.au/


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