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

Run4Rett 2019 – Sunday September 15th

The 2019 Run4Rett will be held Sunday September 15, 11:00 a.m. at Richmond Green Park, 1300 Elgin Mills Rd. E., Richmond Hill, ON, L4S 1M5.

The 15th annual 1k and 5k run / walk is a signature fundraiser for the Ontario Rett Syndrome Associated (O.R.S.A.). It is an opportunity to bring us together to raise awareness and to show a united and strong voice for Rett syndrome to hundreds of participants and supporters. Our goal is to raise $60,000.

All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:

  • Funding of 3 Rett syndrome clinics in Ontario
  • The Hope Fund which provides grants to Canadian researchers
  • Bi-annual family conference and medical symposium
  • The Canadian Rett Syndrome Registry

Please JOIN US! Walk, run or volunteer for the 1K or 5K with family and friends! Families are welcome!

Register Online – Closes September 12th

Download printable pledge and registration form

15th Annual Rett Classic

Sunday June 9th, 2019 – 1:00 PM

Registration:  Beginning at 11:00 a.m. Sunday
Tee-Off:  1:00 p.m. Sunday
Dinner:  Buffet Following Golf
Format:  4 Player Scramble
The Greens at Renton
969 Concession 14
Simcoe, ON  N3Y 4K3

Online Registration

Online Dinner Only Registration

Registration Form

Sponsorship Information

Sponsorship Online Registration

Deadline for registration is June 1st.

Cash donations and prizes/silent auctions items are greatly appreciated!

Thank you for your support!

Research Grant Program 2019-2020

The O.R.S.A. Research Grant Program offers grants for the support of projects with amounts of up to $100,000 (two grants of $50,000 or one grant of $100,000) per year for a period of one year. Funds cannot be used to cover tuition costs.

Through this process, O.R.S.A. invites grant applications from professionals committed to conducting novel, emerging, or innovative research in areas relevant to the cure, cause, prevention, improved treatment and/or understanding of Rett syndrome and its implications on those affected by this disorder. This program is provided to support current investigators and encourage new investigators to pursue research in Rett syndrome.

O.R.S.A. intends to provide awards to outstanding applicants who meet the eligibility criteria of the Program and who have been approved by its Research Grant Advisory Committee (the “Advisory Committee”). Further support is possible to existing funded projects by offering the option to renew funding upon the successful applicant’s re-application to the program.

Download Request for Applications

Letter of Intent Form

Should you have any inquiries, please contact:

Rick Goodhew
O.R.S.A. Advisory Committee
Ontario Rett Syndrome Association

October is Rett Syndrome Awareness Month

October is Rett Syndrome Awareness Month internationally. This year the month has also been recognized by the Government of Canada and listed on their calendar of health promotion.


The month gives us a chance to educate people in our communities about Rett Syndrome and how it impacts those affected and their caregivers. O.R.S.A. will be focusing on a different topic each week during the month:

  • Week 1: General Rett Syndrome Awareness
  • Week 2: Caring for Individuals With Rett Syndrome
  • Week 3: Communication and AAC
  • Week 4: Basic Science and Clinical Research

As part of this, O.R.S.A. will officially launch a YouTube channel with interviews from speakers and participants at our 2018 conference. The videos will be rolled out throughout the month and we encourage everyone to share them with their family and friends.

Once again, major attractions in Ontario will be lit purple on October 29th.

  • CN Tower: beginning at sunset, except for a standard 8 minute light show at the top of each hour
  • Niagra Falls: 10pm – 10:15pm
  • Peace Bridge: Dusk – 1am – Moved to October 28th due to unforeseen circumstances
  • 3D Toronto Sign: 9am until 9am next morning (in rotation with standard lighting) – Moved to October 30th due to vigil for Pittsburgh tragedy

We encourage everyone to light up their homes or business place purple as well! We have a flyer with basic information about Rett syndrome available to download and print for sharing with your neighbours.

Please send any photos to us on Facebook, Twitter or email bhiggins@rett.ca. Watch our social media accounts for lots of updates throughout the month.

Carrying a Dream

A father’s dream; a daughter’s destiny. Follow your dreams and overcome the challenges in your life.

Jason Dekorte, O.R.S.A. member and father of Scarlett recently travelled to Peru to fulfill a lifelong dream of visiting the Inca ruins while raising awareness for Rett Syndrome. He plans to produce a documentary about the trip.

Please check out the indiegogo page and watch the trailer!