Helping Sam Become an "AFOL"
Wednesday, October 16 2013 @ 10:50 PM EDT
Contributed by: Lorrie Walsh
An inspirational story of a young boy that wants to grow old enough to be an "AFOL"
My name is Lorrie Walsh and I'm a very recent member of your organization. I would like to share with you why I joined.
Having gone to my 1 and only Brick Fair in Manchester, NH this year, where I was completely blown away with all the creative displays (YOU GUYS ARE AMAZING), I met Joe Comeau at the NELUG table, and I learned about the world of LUG's and AFOL's, previously, a world I never knew existed. I should point out here, that although I've always "liked" LEGO's (I can hear the "gasps" and "OMG's" from here) and brought my children up with them, I have no talent with LEGO's whatsoever. In fact, while I was at the Brick Fair, I purchased a Christmas ornament that to my surprise needed to be assembled; my 8 year old niece did a beautiful job of putting it together for me!!
So why did I join? I'm not a "lover" of LEGO's, but I LOVE Sam, who is a "lover" of LEGO's. Please let me explain.........
Sam, is my best friend Audrey's, nephew. At 2 years old he was diagnosed with Progeria, an extremely rare and fatal disease, exemplified by accelerated aging in children afflicted with it. These children die at an average age of 13. There is no Cure! Sam's parents Doctors Leslie Gordon (Audrey's sister) and Scott Berns, were told that the prognosis was grim and to enjoy the few years they had left with their only son - but they weren't willing to give up that easily! They spearheaded a campaign to save Sam and other children all over the world who share this devastating illness. They created the Progeria Research Foundation (PRF) and in little more than a decade, their extraordinary advances have led to identifying the gene that causes Progeria and clinical drug trials to treat it, but also the amazing discovery that it is linked to the aging process in all of us!! I have been a volunteer with PRF since its inception and have grown to love Sam, who is now 16 years old (he'll be 17 on October 23rd) and as you'll see, is an amazing young man and fellow "lover" of LEGO's.
Because of their remarkable story, HBO and Fine Films (Academy Award winning directors) filmed a documentary about Sam and his family's search for a cure called LIFE ACCORDING TO SAM, (please click hyperlink to see film trailer) which will be aired on HBO on October 21st. In the opening scenes and throughout the film, Sam is playing with his room full of LEGO's and to quote Sam in the first 30 seconds of the opening scenes, he says "When I'm building LEGO's I feel like I can create my own world and kind of go into that place where, you know, everything is based on MY RULES".
I'm sure, as LUG members, that you share and understand this feeling Sam has towards LEGO's!!!!
A few weeks ago, I spoke with Joe Comeau and he went out of his way to help us make a connection with LEGO corporate, which I so appreciate. HBO showed a private screening of the film in New York, which Mike Moynihan, Vice President of Marketing for LEGO attended, and LEGO's is now promoting the film via its social media sites and is working in house on ways to help the PRF. Yesterday Sam, Leslie and Scott were on the Katie Couric show with Robert Kraft, owner of the PATRIOTS, and Sam's friend. Mr. Kraft made a pledge to match up to $500,000.00 in donations made by Sam's 17th birthday, which is October 23rd. This will give us 1 MILLION of the 4 million needed for the next clinical drug trials and research.
So, as fellow Lover of LEGO's, I'm asking for help passing this post/story on to other LUG's and AFOL groups worldwide, to get the word out, but most important to........
Help find a cure so Sam can grow old enough to be an "AFOL" !!!!!
For information and ways to help, please visit http://www.progeriaresearch.org/breaking-news.html