A couple of weeks ago I got to watch something that thrilled me. I watched thousands of people come together, using their voices and their choices to make something incredible happen. These people united from all over the world for a common purpose. There was a science challenge called BeHeard where a vote a day could deliver $10,000 to accelerate rare disease research on a given number of projects. One of those projects was an entry by Dr Qiang Chang for Rett Syndrome research {please click here to read more} and would – if successful – allow him to further investigate the function of the gene MECP2 which is mutated in Rett Syndrome. $10,000 dollars raised though votes is a pretty exciting opportunity. Parents have to work really hard to raise $10,000 dollars to donate to research. This was a chance to raise money without having to run a marathon, climb a mountain or organize an event. So people got busy spreading the word, setting up a Facebook event page, sharing it with friends and asking for votes. The result? A landslide victory! And a certain person publicly fulfilling a promise with a Funky Chicken dance.

 

It was inspirational and it started me thinking about the power we have as individuals to affect change in our communities, nations and even globally.

 

 

You’ve got the words to change a nation

but you’re biting your tongue

You’ve spent a life time stuck in silence

afraid you’ll say something wrong

If no one ever hears it how we gonna learn your song?

So come, on come on

Come on, come on

 

 

Those lyrics really resonate with me personally. I started writing this blog roughly 10 months ago and hitting publish on that first post – sheesh, I wanted to throw up I felt so vulnerable. Saying what you think, what you feel, is so empowering but before you get the rush you gotta suffer the fear and the pain. I had massive fear of ridicule, exposure, belittlement. What if people thought my musical tastes were blasé? What if they thought I was a terrible writer? What if someone fell asleep halfway through reading about my inner conflicts? What if they thought I was whiney for sharing those conflicts? What if no one ever read it, or commented, liked, shared? What if I failed.

 

 

You’ve got a heart as loud as lions

So why let your voice be tamed?

Baby we’re a little different

there’s no need to be ashamed

You’ve got the light to fight the shadows

so stop hiding it away

Come on, Come on

 

 

One day I just stopped myself, shut the door on the ‘what ifs’ and did it. Does it matter if no one likes it? Will it kill me to suffer a little embarrassment in the pursuit of bravery and sincerity? No. The adrenaline rush that follows feeling fear and going forward anyway is A-Mazing! I love it when I get positive feedback on a post, I love knowing that I connected with someone about something – of course I do – but the real payoff for me is in allowing myself to be vulnerable, in cultivating authenticity.

 

 

I wanna sing, I wanna shout

I wanna scream till the words dry out

so put it in all of the papers,

I’m not afraid

they can read all about it

read all about it oh

 

 

 

As a Rett Syndrome advocate, as the Director of a charity this is something I get to see happen every day. Heroic Vulnerability. I see people reach deep within and pull out strength from the core of a nameless place. They go to extraordinary lengths, not once, or once in a while – but again and again and again. The hero of the story is not the person who never suffers, struggles or doubts. The hero is the one who overcomes. Peter Parker was just an ordinary geeky kind of guy until he was bitten by a spider.  Yes he changed – but that was only the beginning.  He loses his uncle before he truly becomes aware of his strength, before he understands that power and responsibility go hand in hand. Peter Parker agonizes over his choices, suffers with guilt and is largely misunderstood by those around him – but he battles on and that’s the part I find heroic.

 

At night we’re waking up the neighbours

while we sing away the blues

making sure that we remember yeah

cause we all matter too

if the truth has been forbidden

then we’re breaking all the rules

so come on, come on

come on, come on

 

So what does Peter Parker have to do with a voting contest on Facebook? What does any of this have to do with Emeli Sandé? Let me tell you…

 

Victory is powerful. Victory in the face of overwhelming odds is exhilarating! This is not the first contest that’s been won by the Rett Syndrome community. Ever heard of Pepsi? Yup! IRSF knocked that contest right out of the park! {read all about that HERE}  Whenever these contests are won in our community they’re won by the incredible power of families, friends and networks resulting from Rett Syndrome!

 

‘Of course they are’ you say. ‘How else would they be won’? ‘Why is this even relevant’? Here’s why…

 

This kind of win – a community driven win – sends a very important message to scientists.

 

It says – like the famous Little Engine {not exactly Marvel but still a Hero} this ‘little’ syndrome is becoming the incredibly powerful syndrome that could!!

 

It says – This community will beat the drums for research, this community will tirelessly promote science, scientists and the hard work they do. This community does.not.stop.

 

You wanna hitch your wagon to an express train? This is the little engine that will storm the hill and NEVER give up.

 

 

Let’s get the tv and the radio

to play our tune again

it’s ’bout time we got some airplay of our version of events

there’s no need to be afraid

I will sing with you my friend

Come on, come on

 

 

We are living in a time of great opportunity. We are living in a time of change. Power lies at the tip of our fingers if we can just find the courage to take it. There are many things we must endure, there are many things we must accept…but there are some things we need to shout about. We need to make our voices heard where and when they can make a difference. When we stand for something, when we stand together – we become an army. An army of unlikely heroes.

 

Yeah we’re all wonderful, wonderful people

so when did we all get so fearful?

Now we’re finally finding our voices

so take a chance, come help me sing this

 

I wanna sing, I wanna shout

I wanna scream till the words dry out

so put it in all of the papers,

I’m not afraid

they can read all about it

read all about it oh

 

Please read below for a letter of gratitude from Dr Chang, the scientist who will now work extra hard because he saw the overwhelming support from a community of committed, crazy, Funky Chicken dancing Superheroes!

 

 

Dear Rett families, supporters and colleagues,

 

Early Saturday afternoon, I received the official confirmation that Rett syndrome research has won the Rare Disease Challenge voting competition.  On behalf of our whole community, my lab will receive $10,000 for studying the disease mechanisms of Rett syndrome.  By voting our research proposal to the first place, our community has once again come together to show the world our will and determination in finding a cure for Rett.  I cannot even begin to tell you how proud I have been in the last two weeks, because our research proposal was included in the competition to represent our community.  It was quite an experience for all the people in my research laboratory as well to see how passionate our community is in supporting Rett syndrome research.  The research fund means a lot to us, because federal funding is very tight.  But your support means even more, because that keeps our eyes on the common goal we share.  As of ~48 hours ago, you have done a wonderful job in securing necessary resource for my research program.  Looking forward, we are committed to use that very resource to advance research in eventually finding a cure for Rett.  We believe, as you do, that together we shall prevail.

 

Thank you!

Qiang Chang, PhD