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.

Tuesday, October 23, 2012

It's Official

October is Niemann Pick Disease Awareness Month.

I was informed this week that I was officially elected to the Board of Directors for the National Niemann Pick Disease Foundation.  My 3-year term officially starts at the first of the year, although I have been involved since we went to Nashville for the Family and Medical Conference in August.

Check out the Board Picture and information about the Directors.

Every board member has some connection to Niemann Pick Disease.  Most are parents of children, but some are other family members, friends, and those affected.

This position is a voluntary position and my responsibilities include helping the NNPDF fulfill it's mission of supporting and promoting research to find a cure or treatment for all types of Niemann Pick Diseases and providing support services to those affected and their families.

I look forward to lending my knowledge and experience to this wonderful team.

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