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, January 12, 2013

Niemann-Pick Type A Awareness

Sorry for the lack of "original" posts this week.  As you can see there have been some other items that I thought were timely and of interest.  This post is another one of those.

I am directly copying a post written on January 11, 2013 by Shannon Laffoon on her blog www.wylderjames.com.  Shannon lost her son Wylder James to Niemann-Pick Type A in the summer of 2012, shortly after he turned 3.

If you could take a minute and read her post and go to the MASK site and vote, it would be greatly appreciated.  You only need your name and your email address and you can vote once per day per email address.

MASK “Moms Making a Difference” Unity Award

This year has been off to a very busy start.  Getting settled back in at home has been both wonderful and hard. Trying to accommodate for so many wishes/plans for 2013 with Wylder Nation, more books, my own job plans is overwhelming and exciting.  Needless to say, we have been sleeping well this last week, as Steven and I have been so busy.
I had an amazing opportunity or more like an amazing honor arise in this New Year as well.  Our dear friends Boomer Berman and Stacey Web nominated me for MASK “Moms Making a Difference” Unity Award.  I feel overwhelmed and honored that they thought of me for such an amazing achievement award.  Yesterday was the first time I met the beautiful women behind the organization MASK and the other nominee’s (31 total).  MASK is an organization that realizes there are many moms in the community who are making a difference in the lives of children and families every day. They are acknowledging women who are not only engaging and empowering their own families, but go above and beyond to empower others as well. This year is the second annual “Moms Making a Difference” Unity Award where a Luncheon will be held on Thursday, March 21, 2013 at the Phoenician Resort and Spa. All of the nominees will be recognized in next month’s issue of MASK The Magazine, and will be included in MASK marketing and promotional materials.  Here are just a few kind words Boomer and Stacey said when they sent in their nomination:
“Through Shannon’s strength, she is motivating each & everyone who hears her. With Wylder in her heart &  “Wylder Nation” behind her…waves are being made.”……. “Be prepared to have your heart touched and to fall in love with all 35 lbs of this courageous little WARRIOR, Wylder James Laffoon….Shannon Laffoon amplifies strength, courage and the love of a mother.’
Me and Stac :)
Me and Stac @ PCH Cancer Cause Fall 2012

steven and boomer at the same event
steven and boomer at the same event

This is not only an amazing honor for myself but and wonderful opportunity to raise awareness about Wylder Nation, Niemann Pick Disease, and to continue to share Wylder’s message with many.  If we were to get into the top 10 nominees we would get press release about our cause … what Wylder Nation, Warrior Baby and NPD is all about.  If we were to win … we would get NATIONAL press releases as well as a 2 page spread in the award-winning MASK -Magazine Back-to School issue this summer.  As much as I wish it didn’t have to be … this is my work, my passion now … this is our commitment to our friends in the rare disease community and our WARRIOR Wylder James.  This is such a beautiful honor for me as Wylder’s momma and an amazing opportunity for the cause.  So, this is where I will ask you all for your votes please.  Voting began on December 17th so we have some catching up to do Wylder Nation.  You can vote here; http://www.maskmatters.org/shannon-laffoon (one vote per email address, per day till Feb 1st!!!). The top 10 finalists will be announced in a MASK press release on February 4th. The top 10 nominee voting will close on March 1, 2013 and the winner of the “Moms Making a Difference” Unity Award will be announced and celebrated at the luncheon on March 21, 2013, where the additional nine nominees will also be honored. Please share with your twitter followers, FB friends and encourage friends and family to vote so that a disease that does not get enough attention will start too.  I also put a link on the right hand side of http://wylderjames.com/
HUGEMUNGUS thank you to Boomer and Stacey for thinking of me and Wylder.  I am truly honored to be recognized with such an outstanding group of women that do so much for their families and their communities.  Thank you to Boomer and Stacey for amazing nomination, thank you to MASK for recognizing beautiful committed mothers and thank you in advance to all of you amazing Wylder Nation warriors that will vote.  You can see all of the beautiful nominee’s and their works here;  http://www.maskmatters.org/engage/community/unity-award-nominees
With love and hope always. Xoxo


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