Rare Disease Day

Tomorrow, Thurs Feb 28th, is Rare Disease Day and we are getting ready to visit Phoenix Children’s hospital and Scottsdale Shae hospital to spread some love, WARRIOR STYLE!  Remember to wear your jeans tomorrow because “hope is in our Genes”, and your spicy Wylder Nation Tee’s.   

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Let’s raise some awareness for our Warrior and the approximately 30 million people battling rare disease.  Please change your FaceBook profile picture to this sweetest little face …

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I also created this poster to raise awareness and share with others.  Feel free to share it on your fb, twitter, instagrams ect.  You know how to spread the word Wylder Nation. :)

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Please use the hashtags #rarediseaseday and #wyldernation and tag @globalgene and @wyldernation to share your favortite pictures/memories of wylder, you rocking your jeans,  and antyhing special you are doing for the day.  Let’s make it a GREAT day Wylder Nation!!!   

Feel like donating on National Rare Disease Day?  Please donate HERE for our friend Phil at Genzyme who is going to run4raredisease at this years Boston Marathon in Honor of our Wylder James.  HUGE thank you to those of you that have already donated!!!! 

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And/Or donate Wylder’s book “Warrior Baby’ ($12) and we will take it to a child in the hospital battling a Rare Disease .  Just click  on the photo below. 

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 Remember Always, Wylder James Laffoon and all those children who are, have and will battle Niemann Pick Type A disease.  Alone we are rare, … together we are strong. UNITY IS HOPE.  

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Wylder I am looking forward to visiting some of your pals in the hospital tomorrow and filling them with HOPE always on your behalf.  Love and miss you littest one.  xoxo

Comments

  1. Cathy Johnson says:

    Looooove – that picture of Mr. Littles! Look at that impish grin! Spreading the word in every way I can, Shannon, today and every day! xoxoxo

  2. Heard from Heaven: I love you, too, mommy and daddy…….

    Praying that the day will soon be here when rare diseases will be no more — and no Little One will ever have to suffer again.

    #wyldernation ~ kicking Niemann-Pick’s butt, Warrior style.

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