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.

Saturday, September 2, 2017

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.
Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!

October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.


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