Awareness & What It Means

This month is, super-coincidentally, an awareness month for 2 conditions I have – a craniofacial condition (Moebius syndrome) & alopecia, a much more common autoimmune disease.

IMG_4510.JPG

Besides the fact that I’m a bit bewildered by the fact that there are two different craniofacial months each supported by different organizations, I think it’s great to see what various organizations are doing and how they incorporate other organizations to spread the word.

The American Girl company posted a great photo of their “wigless” dolls – perfect for young girls with alopecia or who are undergoing cancer treatments. I loved that it was important enough to feature.

IMG_4512.JPG

I seeing RJ Palacio, who wrote the children’s book Wonder – about a boy with a craniofacial condition – speak tonight and I really think she does a lot to spread the word about craniofacial conditions. Or at least I think it could, so I hope it continues to spread both her message about kindness and about awareness for craniofacial conditions.

Wordless Wednesday: July is National Cleft & Craniofacial Awareness & Prevention Month

20140702-175300-64380192.jpg
www.nccapm.org

So for some reason I’m not entirely sure of… we get 2 months for craniofacial awareness. Yay? Anyway, this is July’s logo and information! Check it out, and if you don’t know much about craniofacial conditions check the supporting organizations and learn about the diverse conditions, some you’ve heard of (cleft lip, for example) and many you have not (Moebius syndrome, other conditions such as Apert syndrome). Spreading the word about awareness of craniofacial conditions is needed, as these are often misunderstood and not really covered by the broader disability community.

Moebius Syndrome Awareness Day

20140124-124835.jpg

I think that the best sort of awareness is spread quite unintentionally, just by living my life and sharing with people who know me and want to know my story.

Every once in awhile, though, a big awareness day thingy makes me happy to be part of this community. It’s amazing how diverse and varied we all are, brought together by chance and through social media.

For more information on Moebius syndrome and MSAD, see http://is.gd/WhatIsMoebius and http://is.gd/MSAD2014.

#MSAD #Inspiration

#MSAD #Inspiration

I feel somewhat obligated to post something today, it being Moebius Syndrome Awareness Day and all, but I am strangely lost for words right now. I can’t quite articulate anything coherent enough about what I’m thinking about (well, the part of the many things I’m thinking about that have anything to do with Moebius syndrome, that is). I’ve tried all day, but I’m afraid I have no great insights or thoughts today.

A singer I follow on Twitter (yeah, doesn’t that sound awkward?) has a quote on their profile that “We sing because we can’t speak anymore.” Fiction and poetry and song lyrics often speak to me, or say what I would like to say, so much more strongly and eloquently than I ever could. So here are a few lyrics that inspire me and that describe different parts of my individual experience with Moebius syndrome.