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, December 15, 2012

The Results of Dan's Dreams

It's been a week since I had my fundraiser to raise awareness and research funds for Niemann-Pick Diseases.  It was an extremely exhausting day.  I think I was more physically tired than emotionally tired.

The event started at 2pm (but I was at the Elks Lodge at 10ish to make sure I had some breakfast first!).  I started setting up around 11:30am.  This consisted of moving a few tables, setting out the awareness items, setting up the raffle and auction displays, putting out lots of information and kids crafts.  I also had to make sure there was food and non-alcoholic drinks for attendees to purchase.

Here is the hand carved wooden 2 foot bear my wonderful neighbor carved.  We auctioned this item.

In addition to the bear we also auctioned items: a signed Major League Baseball and a hand crafted bead jewelery set (earrings, necklace and bracelet).

Here is part of the raffle table:

All these folders had certificates on them that corresponded to gift certificates that had been donated.

Here are some of the awareness items:  a newsletter, and brochure on the symptoms of Niemann-Pick Type C with information about the NNPDF, awareness PERSEVERE bracelets, and Legacy of Hope cards. 

Here are three of the four books that other parents wrote.  The fourth book was being looked at when I took this picture.  From left to right: Following After Trek, Warrior Baby, What Matters Most - Living with Young Adult Onset, and not in the picture, Three Brothers Go to the Beach.

 We even had some special visitors...another family with Niemann-Pick, Type C, the same disease Dan had.  Left to right in this picture: me, hubby, affected child, mom.  This family came from New Hampshire - about a 3 1/2 hour trip to spend a few hours with us in support.  I am very thankful they came.  Their presence made this disease "real" for many attendees.


All in all, we had a good afternoon.  We raised about $1,000 for the National Niemann-Pick Disease Foundation (NNPDF).  I am still making the final tally, but I think it is close to this amount.

I want to say a big THANK YOU to all my friends and family who helped along the way - by giving me suggestions, getting raffle prizes, helping that day.  I know I will forget someone if I start listing them, but I hope they know who they are.

At the end of the event, we participated in the Worldwide Candle Lighting Event, organized by The Compassionate Friends.  This event is held the second Sunday of December at 7pm local time around the world.  The goal is to have a wave of light circling the world in remembrance of all the children who have passed away from any cause at any time.  We lit a few candles and I read 7 pages of names from the NNPDF website of those lost to all forms of Niemann-Pick Disease.  In addition, we added the names of other children that I knew of locally who died recently, including two who lost their lives in a car accident just a few days before.  We had a moment of remembrance for all the children and their families. 

If anyone is interested in learning more about our story or Niemann-Pick Diseases, please use the links on the upper left side of the page (below the picture).  Other families also have websites and businesses.  Those links are on the upper right side of the page (below the picture).  If you wish to donate to the NNPDF, please use the links on the lower right part of the page.  Even if you don't have any extra cash this holiday season, you can still contribute by using Goodsearch or Common Kindness for coupons.


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