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Shimmering Love, Our Mermaid, Phia

November 1, 2015 by Janet Beiswanger

It’s our 4th year celebrating WHS Awareness, with the world, on this Halloween Event!  Our Lil’ Mermaid, her character shimmers so bright.  She hit land and made a splash, with her fun size love.  Last few years we captured her saying, “Trick or Treat” and it is sweeter than Halloween candy.  She believes you get […]

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Halloween Event 2014

October 29, 2014 by Anitra

  It’s Halloween week, and you know what that means… It’s time for the annual WHS Halloween Costume Extravaganza! This is our fun way of getting the WHS community engaged around a universal tradition – dressing our cuties up for the holidays and snapping their pics. Pictured above are Fiona and Ethan, last year’s top […]

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Building Wolf-Hirschhorn Syndrome Awareness [infographic]

September 6, 2013 by KevinO

(Trouble viewing this in your browser? Check it out here as well.)

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A Life Changing Event…for a greater population

January 30, 2012 by KevinO

As a group, we need to stand up and applaud each other, thank our families, and be proud of our accomplishments. A bubble was building and it finally popped. We all know the story now and if you don’t, just check out this link: Brick Walls. On Friday, January 13, 2012, a historical event occurred […]

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Our Official Facebook Group

August 31, 2011 by KevinO

I’ve been sitting tight on starting any additional Facebook Pages or Groups because there are already enough of them in publication. However, I recently reached out to Steph Mcvey, who started the Wolf-Hirschhorn Facebook group back a few years and has since amassed 470+ members. I found that her group follows the same ideals that […]

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1000 Comments and Counting

July 20, 2011 by KevinO

Just recently, this site surpassed the 1000 comment mark. This is a huge accomplishment for all of us and I am excited to say that we’re still growing strong. I want to thank all of you for taking the time and making the investment to share your stories and support the parents of Wolf-Hirschhorn children. […]

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Way to go www.wolfhirschhorn.org

June 15, 2011 by Hilary

Magnolia is in the hospital and guess what we just found in her chart that all the doctors and nurses are using as their cheat sheet? The print out about WHS from this site. THANK YOU Kevin and all of the WHS families for all you do in helping educate everyone about WHS! ~Hilary http://iwontweargrey.blogspot.com/ […]

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wolfhirschhorn.org at 11 months

January 24, 2011 by KevinO

It’s been almost 1 year since the original wolfhirschhorn.org site was launched and we’ve come a long way. Here are a few facts that I wanted to share with all of you.

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Wolf-Hirschhorn Awareness Group on LinkedIn

March 25, 2010 by KevinO

Join the Wolf-Hirschhorn awareness group on LinkedIn.

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The Wolf-Hirschhorn Blog is now on Twitter

March 22, 2010 by KevinO

Subscribe to the Wolf-Hisrchhorn Blog Twitter feed at www.twitter.com/WHSblog.

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