This is a song, for all the good people…

http://www.youtube.com/watch?v=3-2gacuKX4c

NIH Director Dr. Francis S. Collins at the 10th Moebius Syndrome Conference

Honestly my favorite part of the 2012 Conference. I totally teared up. Hope he can make it again to DC this year.

Today is Rare Disease Day, and this song sums it all up for me quite succinctly. It’s about the people I’ve met and continue to meet due to my rare disorders. They transformed my life, gave me my sense of self, connected me to the amazing CCI world… and so much more. I look forward to what else is in store for me on this journey.

A Preview of Rare Disease Day 2014

A Preview of Rare Disease Day 2014

My dog’s getting into the spirit of the day! Actually, he just really likes to hold things so I capitalized on that in this instance. Tomorrow I’m going to Sacramento, CA with many other rare disease advocates from across the state, along with the National Organization for Rare Disorders and the Global Genes Project. We’re not going on Friday the 28th (which is Rare Disease Day) because the legislature is not in session then… so we’re being prompt! I’m really excited to see what we can do collaboratively to advocate the cause of rare disease funding, care and research.

One Year!

One Year!

I could write a long-winded post… but this picture speaks for itself.

Spent a wonderful day at Canine Companions for Independence Northwest Region Graduation/Matriculation yesterday, watching ten new teams graduate and catching up with people including Cassius’ puppyraiser. I love how much Cassius loves “his” people, no matter how long it’s been since he’s seen them. If you love him, Cassius loves you. The ceremony always fills me with renewed hope, and a passion to volunteer and spread awareness of the amazing things this community does.

But really, Cassius has made this past year and my life so much better. He’s an awesome sidekick, a wonderful help, and will always bring a bit of levity to my life. You can’t help but smile when confronted with 70 pounds of wagging goofiness. Here’s to many more.

Canine Miscellany

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A few rather un-related dog things of interest: ThreadStart, an apparel crowdfunding site, has paired with Canine Companions for Independence and produced this wonderful design. I love it, especially since I do think these dogs (and all service dogs) are indeed heros in their own right. What they do is so diverse, depending on the needs of their partners, but their loyalty and joy are truly heroic. I picked up a shirt, because a. you can’t have too many dog t-shirts, apparently and b. I love the design so much! I will wear it proudly.

And in other news:

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If you’ve been watching the Olympics on NBC, you have probably seen the promos for a new television show called “Growing Up Fisher” – featuring a father who is blind and has a (really cute) guide dog. I myself am particularly fond of the one where it cuts to the dog acting as an ice hockey goalie.

I probably don’t have to tell you how abysmal the overall depiction of characters with disabilities is on television. It’s just… bad. I have measured hopes for this one, from the previews it looks really, really funny. I hope it lives up to its potential for a comedic take on life with a disability.

And I hope the dog gets lots of screen time!

Disabilities (are sort of) in Fashion

Jillian Mercado and the new Diesel campaign Jillian Mercado, 26, a New York fashion expert who has muscular dystrophy, is one of the new faces of Diesel. (Diesel )

Disabilities (are sort of) in Fashion

“Model in wheelchair stars in groundbreaking new Diesel ads” (LA Times)

This popped up in my newsfeed this morning, and I thought it was worth sharing. Great for Diesel for showcasing beauty in diversity.

When I was in high school, there was a short-lived disability culture magazine called We that changed how I viewed disabilities of all kinds. I was deeply moved by Rick Guidotti’s Positive Exposure work, and ended up publishing an academic paper on his projects. There is still such a long way to go in how our culture defines what is beautiful and what is mainstream, but these small steps are indeed small steps in the right direction.

Clubfoot Treatment Changes Featured on NPR

Clubfoot Treatment Changes Featured on NPR

This is a fascinating article and discussion about the advances in clubfoot treatment over the past few years. For me, having a clubfoot is difficult even though it was technically “fixed” before I was 2 – I have a lot of chronic pain and balance issues from that foot and leg. It’s great that different, more effective, approaches are being embraced – thanks in no small amount to the power of the internet to connect diverse people facing similar challenges.

Moebius Syndrome Awareness Day

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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.

Commercial You Should Watch: “Duracell: Trust Your Power”

http://www.youtube.com/watch?v=u2HD57z4F8E&feature=youtu.be

Depictions of disability in sports are sometimes… questionable.

I really like this commercial from Duracell featuring Derrick Coleman, the first Deaf offensive NFL player. Kind of cool that it’s being featured.

(but I still want San Francisco to win!)

Chances

Every few months I am overcome by the enormity of chance. I know people have different views on the concept of “why” one happens to have a medical condition (or any other defining life event)… but for me to conceptualize it, it’s just chance. Genetic fluke. Environmental. All of the above. Who knows!

It was simply chance that I was born with Moebius syndrome, and it was chance that I was born where and when and to whom I was born.  For me, those chance occurrences allowed me to have access to access to amazing healthcare and educational resources, a supportive family and community, and the opportunity to be successful.  I know that was mainly just good luck and chance, and I am grateful.

But even more shocking for me, and I think for a lot of us “sheltered” people in first-world countries is that – depending on socioeconomic status and cultural norms – many children are not given that chance. Families aren’t able to pay for healthcare.  It isn’t socially-acceptable to have a child with visible disabilities.  They can’t access necessary resources.  So they abandon these children to state care or the foster system.

Really, really unfathomable. But it happens. It wasn’t that long ago when Western countries did the same (for a heartbreaking perspective, Google “state developmental centers/schools and/or eugenics”).

This post is motivated by a child I just became aware of, “David”. He lives in China and looks so much like so many other boys with Moebius syndrome I know.  He is apparently smart and able to succeed if given the chance.  But not living in the US and being in a large foster home, he does not have access to the same resources and tools that will allow him to succeed.  The chances of him being adopted in China are slim, so he is available internationally.  Taking the chance that someone a world away might see something in him.

I hope someone takes that chance.

(If you are interested in learning more about “David” or other waiting children, see http://www.madisonadoption.com)

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