[vc_row][vc_column][vc_column_text]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.
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 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 unignorable! Give something up that makes others ask why and join you! How can you give?
- Give Something Up & Raise Awareness: Give something up for a day, week or month and let others ask you why to open the door to your sharing the story of Rett syndrome!
- Give Something Up & Donate:Give something up and set up donation to the Ontario Rett Syndrome Association (O.R.S.A.) 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 with O.R.S.A. to raise funds.
We’re all in on it! Rettsyndrome.org, Curerett, Rettland and the Ontario Rett Syndrome Association (O.R.S.A) are teaming 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:
Shannon Starkey-Taylor, Rettsyndrome.org’s COO, is giving up her daily trip to Starbucks and donating the money she would spend back to Rett syndrome.
Kori Coates, CureRett ED, is giving up her vanity and shaving her head for Rett syndrome.
Rettland is doing a unified effort to give up talking for a day, week or for the entire month of October!
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.