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, April 9, 2013

NP Community Activities

I want to write about a couple of activities the Niemann-Pick Disease Community (and others) are participating in.

The first is the Boston Marathon on April 15.  One of the teams of runners is running for Rare Diseases.  One of the runners is honoring angel Wylder Laffoon, who had Type A.

His mother Shannon wrote an awesome blog post about how others can help by showing their Warrior paint to encourage the Rare Disease team.  This is something simple and fun to do.  Shannon would like pictures of all those who are in Warrior paint, so see her blog for the address.

A woman who has Type B, Anne O'Connor-Smith, is participating in a 1/2 Ironman and has requested a $250 matching donation from the local sponsor, the Community Foundation of Brevard. To contribute to the match, please go to the NNPDF donation page and note that any donation is in Honor of Anne O'Connor-Smith, Type B.

Registration is open for the Erin Roberts Memorial Road Race 5K to be held in Hanover, MA on June 15.  Registration is here.

Erin Arline Roberts always had a sweet smile for everyone that she met. If you asked Erin how she was doing, her reply would be “Awesome”. At the age of 16, Erin was diagnosed with a fatal genetic disorder…Niemann-Pick Type C. To date, there is not a cure for this horrific disease. Erin died at the age of 24 from NPC at home among family and friends.

Please sign up to run or walk or make a donation to raise money for research to find a cure for this horrific disease. 

To see all the current events and fundraisers, please go to the NNPDF Fundraiser Page.


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