It’s September 30th and here we are on the brink of another October. For anyone who doesn’t know, in awareness circles, October is the month designated for Rett Syndrome Awareness. That means every October, as a community of parents, family, friends and supporters we do our best to raise the public consciousness of Rett syndrome. For most parents of children diagnosed with Rett, right up until shortly before the point of diagnosis if not directly AT the point of diagnosis, Rett syndrome is a combination of words they’ve never heard before. When they tell their friends and families, those friends and family have also never heard of Rett syndrome. Sometimes, even when they tell their doctors, the doctors are largely unfamiliar with Rett syndrome. This is astonishing. Why? Because Rett syndrome occurs once in 10,000 female births. That’s something people should know about. That’s more often than Huntington’s disease but chances are those very same people who haven’t heard of Rett HAVE heard of Huntington’s. So, every year, we all work hard to change that. We share pictures and stories and facts. We change our worlds in a hope to change THE world. And every year we make a difference. Every year we get the story a bit further out there.
This year we want to get LOUDER. And we hope you’ll join us. In a minute I’ll tell you how, but first I want to tell you about how this idea started.
*warning for new readers * I write the way I think, especially when I’m excited, so you’ll have to use your imagination and a lot of patience to follow me…but please don’t lose hope…I get to a point eventually.
Earlier this year I went to Washington to attend the Rettsyndrome.org conference and when I came back to the UK feeling restless and impatient I knew I needed to do something. I mean personally DO something. Something bolder. I felt like what I was already giving was lacking a personal commitment and I was impatient with the rate at which I was raising money and the typical methods I was employing to raise it. I felt stale I think.
So…go forward a few weeks and somehow I find myself offering to shave my head. As in..shave all the long hair on my head…off. *read more or donate by clicking this link* For me, a change in hair style usually involves like 1 shade variation or 2 inches maximum, so this was a bit radical. Initially I wondered if I’d gone a bit too far but as the evening went on I thought ‘why not?’ It’s just hair, it will grow. Clinical trials don’t grow on my head for free.
You might be wondering at this point ‘why hair, why shave your head?’ That’s easy. When Emlyn was a few months old, way way before we’d ever heard of Rett, she started doing something none of our other kids had ever done, she started pulling her hair out in clumps. It was one of those things that looking back I can see was pretty atypical but at the time we just thought was an Emlyn-ism. She had her first head shave at 5 months. She started pulling it again not long after being diagnosed with Rett and has had all of her hair cut off a total of 3 times to prevent the pulling that we now know is not just an Emlyn-ism but something frequently reported in young girls with Rett. Shaving my head will be nothing compared to the pain and sadness associated with shaving Emlyn’s head, or the pain and sadness other Rett parents have felt when they’ve had to make that same decision for their daughters. No one ever expects to shave their little girls hair off to stop her from pulling it out. Put it up in ponytail’s, sure, braid it, absolutely…but shave it off…never. By shaving my head I’m honouring Emlyn, it’s as simple as that.
The more I considered it the more right it felt…I guess because it felt like action…it felt like getting into the Arena.
“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.” ~ Theodore Roosevelt
Then the idea grew. My friends Colleen and Erica from The Rettland Foundation also said ‘why not?’ and suddenly the 3 of us were all in the Arena about to get radical and bold and BALD together. And it’s about then that I started to feel like a gladiator. That might sound silly, or melodramatic or outrageous but that’s how I felt. And that….well, it felt really good!!
ok…so fast forward to a week later…I’m driving and mentally going over a few things like – as a charity how are we going to make October interesting, what can we do at curerett.org for awareness month, how am I going to make this head shave work, how do I make it relevant, what is the story, why should people care?
Oh gosh – bear with me…..I should back up a second here and say that Shannon Starkey-Taylor from Rettsyndrome.org and I were already discussing how to do something different for October. My gut was saying that the last few years had taken a pretty big toll on Rett parents. It’s hard to explain how much asking friends and family to take a whole month to share, like, comment and care about all things Rett on social media can cost us as parents. By the end of the month it can feel like this huge, depressing, soul sucking, rejection inducing mess. It takes so much energy and speaking personally here, has left me feeling inadequate every October 31st for the past 4 years. I didn’t want that to be the case for 2014.
…anyway, like I said, I’m driving in my truck and thinking and I thought ….(after many meandering boring thoughts I won’t share because this is already terribly long and you don’t even know what the heck I’m on about yet)…..anyway…I thought ‘it’s all about giving something up, it’s about the joy of the sacrifice, the pay off from giving is a rush…but what would other people give, not everyone wants to shave their head….what would you give to make a difference’…and that my friends is the germ of the idea that was watered and fed and led to this….
People say all the time that they would give anything to sleep in; for a night out; for a trip to the spa. In the world of Rett we say we’d give anything to hear our children speak; to see them walk; to find a cure. This made us wonder, What Would You Give? What Would You really Give to make a difference? Would you give up your daily cup of coffee? your monthly trip to the nail salon? your TV addiction? your Friday nights out with the gang? your hair? your voice?
We are asking you to get radical, get loud and get un-ignorable. We’re asking you to give something up, and ask others to join you. So, HOW can you give?
Give Something UP & Raise Awareness : Give something up for a day, a week or even the whole month and be loud about it so people will ask why – then tell them about Rett and about why Giving something up is important to you.
Give Something UP & Donate: Give something up and set up a deposit to Rettsyndrome.org (US) Rettland foundation (US) or Curerett.org (UK) to cover the expense you would regularly pay for this added luxury.
Give Something UP & Get Sponsors: Give something up and ask people to support you by sponsoring your efforts. Set up a fundraising page to raise funds, then share it and watch your support grow.
We’re all in on it! Rettsyndrome.org, Rettland Foundation, Curerett.org and O.R.S.A. (Ontario Rett Syndrome Association) have teamed up for the cause. We would never ask you to do something we weren’t willing to do ourselves. Here are a few examples of how our organisations are giving it up for Rett.
Shannon Starkey-Taylor, Rettsyndrome.org’s COO, will be giving up her daily trip to Starbucks and donating the money she would have been spending back to Rett syndrome.
Kori Dryhurst Coates, Curerett.org’s Executive Director, will be giving up her vanity and shaving her head on the 31st of October. She’s busy getting sponsorship right now.
Colleen English, Erica Bessey Robertson & the whole team at Rettland Foundation are Not Speaking for Rett. They have kits to purchase if you want to join them.
Darcy Balak, O.R.S.A. executive board member, will be shaving his head in honour of this campaign.
There will be plenty more stories to follow and lots of inspiration to share. Please join us and share YOUR story. Use these campaign hashtags
#WWYG – this is our main campaign common tag, What Would You Give
#notspeaking – if you’re not speaking this one’s for you
#LOUD – nothing is LOUDER than silently taking a stand
#unignorable – we want to make a big difference, we want to be unignorable.
#getwhatyougive – you’ll be surprised by how much you get when you give it up
#WHYNOT – What’s stopping you? Why Not give it up and get involved.
on Facebook you can find us at Rettsyndrome.org Rettland Foundation Curerett.org O.R.S.A.
on Twitter you can follow @Rettsyndrome @rettland @curerett @OntarioRettSA
This year, instead of just raising awareness we want to ignite. We’d like you to join us – in the Arena – Daring Greatly. We think you’ll be amazed because as the song says…. You Get What You Give.
But when the night is falling
and you cannot find the light
If you feel your dream is dying
You’ve got the music in you
Don’t let go
You’ve got the music in you
One dance left
This world is gonna pull through
Don’t give up
You’ve got a reason to live
Can’t forget you only get what you give