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

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

Registry Tip Sheet

click here to download the REGISTRY TIP SHEETS


Click on Enter to go to the registry’s site.


Conseils de registre

cliquez ici pour télécharger le CONSEILS DE REGISTRE

Cliquez sur Entrée pour aller sur le site du registre.


CHCH Morning Live

Shari Hamelin & Darcy Balak raises awareness and discusses the upcoming We ‘R’ Family Conference in Hamilton this weekend.


What a success!

The rain decided not to dampen our spirits and the sun came out to brighten our day.

Many pictures are posted on Facebook already.  To be able to DONATE CLICK HERE.




What’s it like at the Run4Rett?

Well, it’s hard to really get a feel for how awesome it is without being there.  Many of our families tell us they wouldn’t miss it.  It is the main event for Ontario families with Rett syndrome.  It’s a great chance to meet families from across Ontario in a really supportive atmosphere.  To see some photos of past Run4Rett events, why not check out our “What is Rett Syndrome?” video on YouTube? (http://www.youtube.com/watch?v=d2Rv8JLH85I)

 What if I’m not a runner?

Most people who attend the Run4Rett choose to walk the 1 km or 5 km routes.  They are there to show support to our families.  There is no pressure to run.  The idea is to have fun!

Can kids come?

Yes! Bring kids!  Richmond Green park is a safe place to run & play.  There is playground equipment, face painting, and other fun activities for kids.

My daughter with Rett syndrome doesn’t really like noise and over-stimulation.  Is it okay if I leave her at home?

Of course, these personal decisions are yours, but we want to assure you that our event is very Rett friendly!  We have a DJ who plays festive music.  There is room to stroll around away from the crowd.  There is also an indoor shelter with washrooms.  Most of our beautiful people with Rett syndrome enjoy the day and soak up the attention and support.  There’s nothing like a cheering crowd to inspire you!

 What if I want to run 10 km?

You are welcome to arrive early or stay late and run the 5 km route twice.  We have had a few runners who do this each year.  Your 10 km route will not be timed, though.

Is there chip timing?

We do not offer chip timing, but we have official timers on hand to record and post your results for the 5 km race.

Is it an accurate 5 km route?

 Yes, our route is measured for accuracy, so that those who need to document times will have accurate results.

How do I register?

You can download and print a BROCHURE/PLEDGE SHEET, fill out the registration information, and mail it in that section.  You can also register online at www.runningroom.com.

How do I collect pledges?

 Let all your friends and coworkers know they can sponsor you and/or your child by filling out the BROCHURE/PLEDGE SHEET and giving you a cheque made payable to O.R.S.A.  They can also sponsor an athlete online at www.runningroom.com  (For help with online registrations and donations, please contact Karen@rett.ca.)  We also suggest contacting your local media to see if they’ll do a story about your involvement in the Run4Rett.  (For help with media awareness, please contact Terry@rett.ca.)

Can people get a tax receipt for their pledges?

Yes, tax receipts will be issued for amounts of $20.00 or more, as long as you provide the complete mailing address for us (and make sure we can read your writing).

Is there a way to participate without paying registration fees?

Registration fees go toward the overall funds donated to the Ontario Rett Syndrome Association, so they are certainly not a waste of money.  We encourage you to register and participate.

Individuals with Rett syndrome can register for free.  The most effective way to collect pledges is to ask people to sponsor a person you know with Rett syndrome.     We encourage parents and caregivers to register this person online.  You can then collect pledges in person and also direct people to pledge online by sponsoring an athlete at www.runningroom.com.

Volunteers at the event do not need to pay or register as participants.  If you would like to find out how easy and fun it is to volunteer, please contact run4rett@rett.ca.  There is also a “volunteer” section at www.runningroom.com. 

 How do I set it up so family and friends can donate in my daughter’s name?

You can make a free online profile for your daughter on the runningroom.com web site:

  • Find the Run4Rett event page by searching for it on the Running Room site or by using this link: http://www.events.runningroom.com/site/?raceId=10644
  • Click on the Register tab which should give you drop-down choices.  Choose “Rett Angels.”
  • Enter your basic information.  There are a few steps to this process.  Don’t give up.  If you have any problems, contact Karen@rett.ca.
  • Once your daughter’s page is set up, save the url link by copying it or bookmarking the page for later.  This is the link you want to send to friends and family by email.  You can also copy and paste this link into your Facebook status.  People and can also find this page by going to the “Sponsor an Athlete” section at www.runningroom.com and entering the person’s name.

How can our family support the Run4Rett if we cannot attend?

 We hope you can come, but if you can’t, you are welcome to walk or run in your home town on Sept. 22 and collect pledges to support the Ontario Rett Syndrome Association.  You can also sponsor someone who is at the event in Richmond Hill by sponsoring an athlete at www.runningroom.com or collect general donations for O.R.S.A. to help out.

If you can help us find event sponsors or donations for the race kits or silent auction, please åcontact run4rett@rett.ca.

What’s up with all the different T-shirts?

A few years ago, participants began to wear their spirit by finding some way to identify with one individual with Rett syndrome.  You might see different-coloured shirts for Team Abby or Team Erika or Team Elizabeth, for example.  Some “teams” have worn scarves, ribbons, buttons, or hats.  We have found that spirit wear encourages more friends to come out and participate, but it is entirely optional.  We are all there to support every single person with Rett syndrome.  We all cheer each other on.

How do we register as a team?

There is not an official team registration process.  You can register as an individual or as a family.  Feel free to join others to form a “team,” but it is just for fun and we don’t keep track.

 If we decide to be a team, how do we get the shirts?

Each “team” is responsible for having its own shirts made, if that’s what you want to do.  These are not provided by the Ontario Rett Syndrome Association.

How do I get myself one of those beautiful, orange volunteer shirts?

Funny, you should ask!  Those orange volunteer shirts *are* provided by the Ontario Rett Syndrome Association for those wonderful people who help make our event a success!  You are welcome to join this group by contacting run4rett@rett.ca or visit www.runningroom.com volunteer page

 I know some high school students who need volunteer hours.  Can they volunteer at this event?

Yes, they can!  We are always in need of course marshals to help direct and cheer on our runners.  Please contact run4rett@rett.ca to get all the details.  Bring your school’s community involvement form to get it signed on event day.

What other volunteer jobs are there?

We need help at registration, at the start and finish line, at the silent auction, and with the food and kids’ activities.

What is the fundraising goal for the Run4Rett?

Our goal is to raise $50,000 so we can keep our funding commitments for ongoing and new projects.  If we raise more than that, we can do even more to help people with Rett syndrome.

Where does the money go?

All proceeds go to the Ontario Rett Syndrome Association to fund things such as medical clinics, conferences, research, and the national clinical registry.  O.R.S.A. is run by a volunteer board of directors, so your donations and pledges can be used directly to help our families.

What if I have other questions?

If you’d like more details, please contact David or Sherry Lawrence at run4rett@rett.ca or by phone at 519-442-7604

CTV The National: A Voice for RS

Story One:   Click Here to view The CTV National News on Rett Syndrome.

Story Two:   CTV Kitchener ~ New Technology Helps Teen Talk

Some of  those affected with Rett syndrome would love to have their voices heard.  Well that is the case for Abby Congram.  Abby is 14 years old and finally has a voice to be heard with her new Tobii  eye gaze technology.

View this video aired yesterday at 11pm on CTV.  CLICK HERE FOR CTV COVERAGE

O.R.S.A.’s president Terry Boyd was interviewed in Ottawa and provided insight to the debilitating disorder.

News Release – Boston IGF –

Boston Children’s Hospital has begun the Phase 2 clinical trial entitled “Pharmacological Treatment of Rett Syndrome by Stimulation of Synaptic Maturation with IGF-1.” They are currently recruiting girls with Rett syndrome for this study.

This phase of the trial will include 30 children with Rett syndrome who are female, between the ages of 2 – 10 years old.  They must have a clinical diagnosis of Classic Rett syndrome, a documented genetic MECP2 mutation, and they must be in a “stable” stage of the disease.

You may apply if you live in Canada and your primary language is English.  You must have access to the internet to correspond online.  Several forms must be completed for the initial application.  If chosen for the in-person screening, families will be required to travel to Boston for a screening visit.  If chosen for the trial, families must commit to a total of 7 trips to Boston.  Travel and lodging costs will not be covered.  It is the family’s responsibility to pay for travel and lodging if enrolled in this trial.  The time commitment for the trial is at least one year.  Individuals should not be in more than one clinical drug trial at the same time.  The child must also be stable on current medications

The Boston clinical trial will be one of several opportunities open to Canadian families in the coming years. Different trials will have different eligibility criteria.  The Canadian Rett Syndrome Registry will be implemented in 2014, allowing for clinical trials to begin in Canada.  The Ontario Rett Syndrome Association (O.R.S.A.) is the founder of this registry and has been working tirelessly to ensure this registry is implemented properly.  Several clinicians and researchers are attracted to the clinical trials and research opportunities soon to be available in Canada.

For more information about the Rett Syndrome Research Program at Boston Children’s Hospital, please email rettresearch@childrens.harvard.edu.

For more information about clinical trials in Canada or the Canadian Rett Syndrome Registry, please call Terry Boyd, O.R.S.A. President at 519-474-6877 or email terry@rett.ca.



CTV Kitchener ~ New Technology Helps Teen Talk

Some of  those affected with Rett syndrome would love to have their voices heard.  Well that is the case for Abby Congram.  Abby is 14 years old and finally has a voice to be heard with her new Tobii  eye gaze technology.

View this video aired yesterday at 11pm on CTV.  CLICK HERE FOR CTV COVERAGE

O.R.S.A.’s president Terry Boyd was interviewed in Ottawa and provided insight to the debilitating disorder.



Rett Syndrome Research News

Scientists at the Toronto Western Research Institute at the University Health Network have revealed restored function in the Rett syndrome mouse model across a broad range of symptoms. The study was led by Dr. James H. Eubanks, PhD and recently published in Human Molecular Genetics (Pubmed abstract).


Rett syndrome is a severe neurological condition that affects mostly females.  The Methyl-CpG-binding protein 2 (MeCP2) gene studied by the Eubanks group may also be implicated in other X-linked genetic conditions, such as Angelman syndrome.  Rett syndrome presents in similar ways to Autism and to movement disorders such as Parkinson’s disease.  Therefore, scientists look at these kinds of discoveries with great interest.


Previous studies have shown that symptoms of Rett syndrome may be reversible.  In 2007, Dr. Adrian Bird, PhD discovered that delayed MeCP2 reactivation in the mouse model resulted in improvement in many Rett-like symptoms.  Dr. Eubanks explains, “This was a monumental study, but it did not test whether or not specific behaviors with direct relevance to those seen in Rett syndrome, or alterations in brain wave activity patterns, would be improved.  We wanted to use a battery of tests to see if the rescue would apply across the board to different regions of the brain, and improve the circuitries responsible for these different behaviors.”


In Eubanks’ study, detailed investigations compared both male and female “rescued” mice to those with MeCP2 deficiency.  Following MeCP2 reactivation, significant improvements were seen in motor and anxiety-like behaviour, seizure activity, and regulation of body temperature.  In addition to specific behavior improvements, Eubanks says, “the strength of specific brain wave patterns are brought back to normal following reactivation.”  And the lifespan of the female rescue mice was improved to a level comparable to wild-type (normal) mice.


The significant differences in male and female mouse models of this X-linked disorder add to the complexities of Rett syndrome research.  Most scientific studies to date have focused on male mouse models.  Eubanks has extensively studied female MeCP2-deficient mice – always comparing them to the male model and wild type – because it is the gender-appropriate model for the clinical disorder.  According to Eubanks, “for most of the behavioral tests and EEG analysis we did, the females recovered to levels even better than that of the male rescue mice.”


The results from this investigation provide enormous hope for people with Rett syndrome and related conditions.  Eubanks explains, “Our work shows in the gender appropriate model of Rett syndrome, a very delayed reactivation of MeCP2 in really sick mice reverses not only their general malaise, but improves – in some cases all the way to normal levels – deficits in specific behaviors directly relevant to Rett syndrome.  The improvement involved all of the neural circuits we examined.  In the range associated with cognition and thought processing, we saw almost a complete recovery in power in the female rescue mice.  So the rescue we saw really does indicate the MeCP2-deficient brain is not damaged beyond repair.  It seems to be impaired in a way that does not prevent it from reaching a full recovery.”


Still, this study involves the mouse model for Rett syndrome.  There is work to be done to see similar results in humans.  You can’t do to humans what was done to these mice.  Studies such as this one provide further specific evidence of what might be possible in human patients.  Researchers will continue to generate ideas for treating patients when they see this remarkable potential for recovery.  For Eubanks, these results have encouraged him to pursue gene therapy for patients with Rett syndrome.  “This study shows it is possible, and we now need to develop a gene therapy system that will allow MeCP2 to be delivered in a way similar to what was done in the current study.  Our lab is currently testing a new system we think may get us closer to this goal.”


Dr. Eubanks is a member of the Ontario Rett Syndrome Association’s Research Advisory Committee. He is also O.R.S.A.’s 2012 Award of Merit recipient for demonstrating outstanding commitment to the mission of the association.  He has shown true dedication in making a difference in the lives of those living with Rett syndrome.




Rescue of behavioral and EEG deficits in male and female Mecp2-deficient mice by delayed Mecp2 gene reactivation. Lang M, Wither RG, Colic S, Wu C, Monnier PP, Bardakjian BL, Zhang L, Eubanks JH. Human Molecular Genetics. 2013 September 17.





This work was supported by the operating grants from the Canadian Institutes of Health Research to J.H.E. (MOP-106481) and B.L.B. (MOP-286154), and a proof of concept grant from the Ontario Rett Syndrome Association. M.L. was the recipient of a University of Toronto Entry Fellowship, and S.C. was the recipient of Queen Elizabeth II Graduate Scholarship in Science and Technology. Funding to pay the Open Access publication charges for this article was provided by Canadian Institutes of Health Research Grant MOP-106481.



James Eubanks


Toronto Western Research Institute

399 Bathurst Street

Toronto, Ontario, M5T 2S8

Telephone: 416-603-5800, ext. 2933

Telefax: 416-603-5745

Email: jeubanks@uhnres.utoronto.ca