Arthrogryposis Awareness Day 2011

Once again another AMC Awareness Day has come and gone.  (It was the same day as our tire blowout on the freeway so I was a bit distracted and didn’t post about it earlier.)  Every  June 30th  is the official awareness day. Unlike other awareness days (and I participate in Deaf Awareness Day every year) it seems like this is a condition that truly needs awareness. I have yet to meet someone who asks what my daughter has, and then recognizes the condition or can even pronounce it! So we need more awareness! Although I did get to share about arthrogryposis with two new people this week.  I  got to share Laelia’s condition with my driver in Seattle (who got  Laelia’s card and  gave me a hug afterwards! Hi Buzz!), and with a dog-walking lady at the animal  shelter who had muscular dystrophy and compared her AFOs with Laelia’s. :)

This year most of my friends and family participated, which was amazing! (I loved seeing all my cousins in blue!) The only thing you have to do is wear blue that day. Even the AMC’ers themselves wear blue. Want to see all the blue? Click here to see all the AMC’ers who participated! Laelia’s picture is on the fifth page down. We submitted the “shirt art” that my Aunt Linda created for her.  But this was her official picture for our Facebook friends:

See my blue flower?

Princess Laelia!

And here are a few  of me wearing blue too, but keep in mind I had not showered after my sweaty, two-hour freeway drama. And Laelia was too busy  being goofy…  :)

Thanks to everyone who sent us pictures of your blue-wearing selves! We appreciate your support! Thank you!

Here are a few of the pictures people gave me. Although many more told me they were wearing blue or they put Laelia’s picture (or an awareness message or picture) on their Facebook profiles! (Thanks Charilyn, Linda,  Lynn, Brenda, Debi, Jim, Phyllis, Sarah, Beth, Chelsea, Deb,  Lauren, Melissa, and many, many of my AMC family not pictured!)

 

3 Responses to “Arthrogryposis Awareness Day 2011”

  1. Joann smith says:

    Thank you very much for letting me know. I am not very good at pronouncing difficult words so i don’t know if i can pronounce ‘arthogryposis’ …I know Laelia can! I didn’t know 6/30 Arthogryposis day. I will put it on my calendar and wear blue next year.

    I loved the pictures of your princess and all the friends who participated.

  2. Lauren B says:

    I always get excited when people get out their iphones to Google Arthrogryposis from the scribbles she did for The Park Gallery :) That picture is a big hit-people love it!

  3. Mary Romero says:

    My son is 3 months old with arthrogryposis, and I found a website that said June 30th was arthrogryposis awareness day on June 29th!! I’m so glad i saw it! I spread the word to everyone I know to wear blue. My family all wore blue that day. Unfortunately, I was stuck in bed with a stomach bug. :( Your daughter is beautiful!! :D

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