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.

Wednesday, February 19, 2014

Rare Disease Month - Day 18

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 is Johnathan in California.   His mom Rebecca has spent many hours creating the Global Genes Facebook profile pictures for many of the NPD families the past few years.  They are also one of the host families for the 2014 NNPDF conference in San Francisco.


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