October Rett Syndrome Awareness Month

What Would You Give?

September 30, 2014

Here we are on the brink of another October. For anyone who doesn't know, October is the month designated Rett Syndrome Awareness Month. That means every October, as a community of parents, families, friends and supporters, we do our best to raise the public consciousness of Rett syndrome. For most parents, 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 family, those friends and family have 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 females. That's something people should know about. A girls is born every 2 hours who developed Rett syndrome. 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. Every year we make a difference. Every year we spread the story of Rett syndrome a bit further.

This year we want to get LOUDER.

We hope you'll join us. Here's how...

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, get un-ignorable. We're asking you to give something up, and ask others to join you. So, HOW can you give?

  1. 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.
  2. 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.
  3. 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.

Please join us and share YOUR story. Use these campaign hashtags to spread awareness for the WWYG Campaign and Rett syndrome.

#WWYG  - this is our main campaign common tag, What Would You Give

( On Facebook) ( On Twitter)

#notspeaking   - if you're not speaking this is for you

( On Facebook) ( On Twitter)

#LOUD  -  nothing is LOUDER than silently taking a stand

( On Facebook) ( On Twitter)

#unignorable  -  we want to make a big difference, we want to be unignorable.

( On Facebook) ( On Twitter)

#getwhatyougive  - you'll be surprised by how much you get when you give it up

( On Facebook) ( On Twitter)

#WHYNOT  -  What's stopping you? Why Not give it up and get involved

( On Facebook) ( On Twitter)


We're all in on it!

Rettsyndrome.org, Rettland Foundation and curerett.org 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 organizations are giving it up for Rett.

  1. 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.
  2. 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 sponsorships right now.
  3. The whole team at Rettland Foundation are Not Speaking for Rett. They have kits to purchase if you want to join them.
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