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, November 2, 2012

Busy, Busy, Busy


October has come and gone and after writing a post every day for Awareness Month, I'm a bit typed out. So here are some random tidbits for today...

Random #1: A wonderful NPA mom has written Warrior Baby.  She has this wonderful idea about getting the book into the hands of other sick children, including those affected by Niemann Pick Diseases.  You can read more about her idea here and more about the book itself here.

Random #2: The church that Daniel was baptised in is having its annual Memorial Mass for those who were lost in the preceeding year.  Please keep us in your thoughts tomorrow morning as we spend some time with other families who have lost a loved one.

Random #3: We dodged a bullet with Hurricane Sandy.  In a unique weather pattern, the storm circled around us and never hit us directly.  We had lots of wind, a bit of rain, and some scattered power outages. Here is a map to give you some perspective.  I live even further north than point A (Albany, NY).  Point B is New York City, about 3-4 hours away by car.

Random #4: I am starting to put together a fundraiser for NNPDF for early December to celebrate Dan's birthday.  More information coming soon.

Random #5: The 20/20 Challenge is still going!  All online donations can be made until November 5.  All checks/money orders need to be dated by November 5 and postmarked by November 9.  There is still time!


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