P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

Join “What Would You Give?”

[vc_row][vc_column][vc_column_text]Rett Syndrome Awareness MonthHere 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.


on Facebook you can find us at O.R.S.A.     Rettsyndrome.org     Rettland Foundation      Curerett.org


on Twitter you can follow @OntarioRettSA    @Rettsyndrome    @rettland    @curerett


Awareness Package

October is Rett Syndrome Awareness Month.  Please use the following articles to create a Rett Syndrome Awareness Package.   Help educate your community about this debilitating syndrome for the month of October.  Together we can build healthy tomorrows.

Read More

Communication Workshop

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Rett Syndrome Communication Workshop: From Theory to Hands-On Training

[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″ css=”.vc_custom_1409889295099{border-color: #6b0065 !important;}”][/vc_column][vc_column width=”1/4″][/vc_column][vc_column width=”1/4″][/vc_column][vc_column width=”1/4″][/vc_column][/vc_row][vc_row][vc_column width=”1/1″][vc_column_text]The Ontario Rett Syndrome Association is proud to offer this educational opportunity, focused on communication strategies for individuals with Rett syndrome. Having an effective communication system for a child or adult with Rett syndrome can be challenging. In recent years, there have been exciting advancements in communication technology. We will provide exceptional speakers to inspire family members, care givers, support staff, educators, speech and occupational therapists and medical professionals. You’ll meet two of the leading experts in literacy and communication strategies for people with complex communication needs. Let’s work together to continue to unlock the communication and learning potential of each person with Rett syndrome!


Download the complete brochure with all the details.


Workshop registration opens on September 12th, 2014 and is closed on October 27th, 2014 or once all spaces are filled.




Erin Sheldon earned her M. Ed. at Queen’s University studying assistive technology and literacy instruction for students with significant disabilities. Erin is the mother of a grade 6 student diagnosed with Angelman syndrome, including co-morbid autism, low-vision, and intractable epilepsy. Erin works with families and school teams to create literacy programs that all students can access.


Judy Lariviere is an Assistive Technology Specialist and Occupational Therapist with a Master’s degree in Special Education who has worked in the field of AAC for the past 26 years. Through her private practice in California, Judy has over 16 years of experience working with girls and young women with Rett syndrome; identifying their best means of access to technology for communication and learning, while also implementing tools and strategies to support their educational progress, particularly in the area of literacy.




Limited unique private consultation sessions with Judy Lariviere are available for current O.R.S.A. family members. Each session is one half hour.  The session will provide a time to discuss current communication challenges and to obtain strategies directly related to your specific child.  Your child/adult with Rett syndrome will not attend.


Erin Sheldon will discuss the role of literacy to empower every person to tell us what she’s thinking.  This workshop will demonstrate strategies to ensure every person can access the literacy experiences that bring joy, enhance friendships, and give her power.


Judy Lariviere will show how significant improvements in communication have been observed and documented over a relatively short period of time when apraxia, sensory regulation, and ease of access are taken into account.  She will show various strategies for building on each individual’s unique natural gestures and best “yes” responses, including videos of girls and women engaging in conversations and literacy learning experiences on their eye gaze systems.


Day Two is an advanced hands-on workshop in which participants will learn several functions and features of Tobii Communicator, the communication-based software that runs on Tobii C series, I series, and Windows-compatible tablets. Attendees for Day Two will be emailed with the links and page sets required to participate in the Advanced Tobii Eye Gaze Workshop: Hands-on Make and Take full-day session. A PC laptop or a Tobii communication eye gaze device will be required to participate in the Day Two session.




The workshops will be held in two locations, Mississauga and Ottawa. Attendees can attend either one or both days. Space is limited. Before registering, carefully review the detailed brochure. Please register as soon as possible to avoid disappointment.


Registration for the workshop is only be available online.  Registration is limited and will be closed once the maximum number of attendees has been reached for each day. Registration fee of $50.00 per day includes all required materials, two breaks and lunch. There are 75 spaces available for Day One and 30 spaces for Day Two. In order to provide every attendee with a positive workshop experience, please review and input all the acquired information on the registration form.


Workshop registration opens on September 12th, 2014 and is closed on October 27th, 2014 or once all spaces are filled.




If you have any questions please call (519) 474-6877 or email karen@rett.ca or terry@rett.ca.



Edwards Charitable Foundation

Ontario Rett Syndrome Association

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The Hope Fund

O.R.S.A. is proud to announce the creation of The Hope Fund. This fund exists solely for research. 100% of all these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome.

The Hope Fund will be releasing a $50,000 research grant this year. We are very thankful to REF 4 RETT for this initial funding for The Hope Fund!  We look forward to building on this with future fund raising.

To donate directly to The Hope Fund click here

Thank You For Your Support!!!

The sun shone on the 10th annual RUN 4 RETT