Partnering for Cures

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Steven and I are in New York City for an event called Parterning for Cures put on by Faster Cures.  We have been really enjoying our time in the City … the last time we were here was January 2010 and we were taking Wylder to Mount Sianai Medical to meet Dr. Wasserstein.

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We started this trip out right … we landed last night and immediately met up with Quinn’s mom and dad for dinner in the City.  The Linzer’s rock!  That is about all I have to say about that.  We felt an increidble connection to them because of our sweet children.  Given all they have been through and continue to go through they are bright and opptimistic … and their love for Quinn and their boys is just incredible.  They are such an inspirational family to Steven and I.  We feel so blessed to have met them and squeezed them in person!   

selfie (tee hee)

selfie (tee hee)


The Partnering for Cures event starts this evening and we are excited for our packed filled days.  There are some amazing resources and opportunities for us to connect with.  #WylderNationInNYCity

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Today was the NY marathon and Steven and I stopped by for a sneak peak at a few of them crossing that finish line.  Of course, it had us thinking and chatting about Phil.  So we were thrilled when we returned to our room and saw he had posted a update on how his 100 mile run was.  We had talked with him on the phone and heard about the run, but are so excited he is sharing the details through his blog.  It was an absolutely incredible experience.  All I have to say is … Angelic Intervention.  Beautiful.  Click on the photo below to read about Phil’s journey with Wylder, Jacob, Trek, Quinn, Riley, Faith, Lily, Kaitlyn and Amber.


We love and miss you Wylder.  We went o FAO Schwarts today and bought your brother a snuggle bear and you a grinch tree orniment.  We think of you always.  See you in our dreams littles. xoxo


  1. glad you guys made it to see some of the marathon, rockefeller center and fao schwarz today. we just had SO much fun with you last night, it was so wonderful to meet you in person!! best of luck with the conference, can’t wait to hear what you get out of your looooooong days there ;) xoxo

    • Mommy and Daddy says:

      We were all over your city today Eileen, we love it here … and we love you guys. Sooo happy we got to spend the night with you all in person. We will see you again soon for sure. xoxo

  2. you look so cute with your matching Starbucks:) I loved all the photos of Wylder there 3 years ago, I wish he was with you this time…
    I am so glad you got to meet the Linzers, I know the air was filled with lots of love and 2 precious angels giving their mamas and daddys big hugs.
    Have fun in New York! so much love ,Chelsea

    • Mommy and Daddy says:

      tee hee, you know how i like those steamers. Thanks for your sweet words chelsea, we just loved being with the Linzer’s and talking about our sweet little ones. Trek’s name came up a lot too (love that little guy). xoxo

  3. Cathy Johnson says:

    So glad that the Laffoons and the Linzers got to meet. I’m sure there were tons of hugs and tears and laughs. It was SO awesome to read Phil’s firsthand account of his run. It is clear that we was indeed lofted on the wind of those mighty little angel wings. Anxious to here what you learn at the Partnering for Cures event. I continue to be amazed at and thankful for your unending devotion to finding cures for rare diseases, especially NPA! You guys totally rock! xoxoxoxo

    • Mommy and Daddy says:

      Us too! It was an amazing night and we were thrilled to hug them in person. Partnering for Cures was a packed full event that was just LOADED with information, it was amazing. THanks Cathy. xoxo

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