Thank you!

Thank you, everyone, for making Moebius Syndrome Awareness day a big success, and for spreading awareness about Ozzie!!

As i watched my facebook and instagram feed turn purple, i realized how special and amazing it is that the collective communities are coming together for all the moebians.  I follow one girl on instagram, her name is Zayne, and she has Moebius syndrome – and seeing the pictures of her middle school dressed in purple, all her friends wearing shirts for her…. it almost made me cry to know that when Ozzie is ready for school that he can have a special day like that too.  How people around him will know that he’s really great, and that he just looks a little different.  It also made me think how fortunate we are to have things like The Many Faces of Moebius website and facebook page, that the Moebius Syndrome Foundation exists, that we can connect via the internet and conferences.

I’m also struck by how Ozzie’s experience in school will be different from, say, those with Moebius Syndrome who went through the school system 20 years ago.

I’ve collected photos from all those people who wore purple for us on Friday! you can see it here!

DSC_0017We love you!

MSAD’14 is here!!

I’m loving seeing my facebook and instagram feed become a wave of purple as people show their support for our family!!

Feelin’ pretty awesome today.

Oh, and check out this article!! Look who’s on the cover!!



It’s Coming!! Moebius Syndrome Awareness Day!! It’s January 24th (this friday) and we would LOVE it if you could show your support for our family by wearing purple on friday.

The T-shirts from the fundraiser have been arriving, slowly, and i REALLY hope that they all get here in time for Friday.

If you would like to post about MSAD on friday on facebook or twitter or instagram (@iamthediva) please use the hashtag #MSAD14 so we can share with the rest of the Moebius Community.



T-Shirts for EVERYONE!!

Our T-Shirt Fundraiser was a great success!! we sold 73 t-shirts, with a goal of 50!! We are so thankful to each and every one of you who bought one!  More, we’re so thrilled that 73 people will be spreading the Ozzie love on January 24th!!

Through the fundraiser, with your help, we raised just over $1100 US for our Trip to Washington this summer!

Also, a HUGE thank you to Tara Johnson, she designed the shirts!! 😉

From the bottom of our hearts, thank you!!



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