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

O.R.S.A. Announces Family Conference Grant Sponsored by SickKids

O.R.S.A. is pleased to announce a sponsorship offer from the SickKids Foundation with the condition that the funds be used to help families to attend the “Believe in Tomorrow” conference. If you are a parent or guardian of someone with Rett syndrome, we encourage you to complete this application for reimbursement of conference fees.

Due to limited funding, not everyone who applies will get the reimbursement. On March 24th, our Board of Directors will determine the distribution of these funds based on the applications received.

Family Grant Application Form

Application Deadline: Friday, March 23rd 2018

Contact krichard@rett.ca if you have questions about this process.

Please register for the conference as soon as possible.

Conference Registration Deadline:  April 1st 2018

If you’re traveling from out-of-town, please ensure you book your hotel room by March 19th at 3:00 p.m. to get the conference discounted rate.

Conference brochure

Hotel information

“Believe In Tomorrow” Conference – April 13 – 15, 2018


The “Believe In Tomorrow” conference will take place on April 13 – 15, 2018 in Toronto! Join us for an exceptional 3-day conference designed to empower families and professionals with information, connections and friendships that will support us as we grow and learn more about Rett syndrome!

Download conference brochure and full agenda


Conference Fees (includes, conference material, attendance, 3 lunches and Saturday Celebration dinner):

Early Registration $250.00 – February 15 to March 3, 2018

Registration: $300.00 – March 4 to April 1st, 2018


Holiday Inn Toronto International Airport

970 Dixon Road, Etobicoke, Ontario M9W 1J9

The conference registration fee DOES NOT cover accommodation costs. Everyone must book their own hotel room(s) by March 13, 2018 for conference discounted rate.

Single and Double Rate – $129.00 – (plus tax & DMP) $149.65 inclusive

Triple Rate – $139.00 – (plus tax & DMP) $161.25 inclusive

Quad Rate – $149.00 – (plus tax & DMP) $172.85 inclusive

Online booking link listed below: Ontario Rett Syndrome Association – CALL IN


Call reservations department at 416-674-4343 and ask for the Ontario Rett Syndrome Association group rate. Group Code: OSR


Friday is Research Day and we’re pleased to have several scientists presenting updates on Rett syndrome investigations. We will also hear about the latest in clinical trials internationally and progress towards clinical trials in Canada.

On Saturday, we’ll have a dozen doctors joining us to present and/or be available to answer any medical questions you may have.

Saturday and Sunday feature concurrent sessions with workshop choices. Workshop topics include communication and literacy, adult services, legal considerations, person-centred planning, AAC tech tips, self-care and planning for fun!


Apart from the regular conference agenda, we’re proud to facilitate a Scientist Meeting and a Clinician Meeting on Saturday. This is a chance for professionals to collaborate and learn more from each other about Rett syndrome.


This optional event is designed for families to get to know other families attending the conference from all over Canada. Meet, share and stay connected!


Visit the Exhibitor Fair located in the Cabinet Room.

Friday April 13th & Saturday April 14th, 2018 ~ 9:00 a.m. – 4:30 p.m.


The Ontario Rett Syndrome Association’s Resource Centre will be located at the registration desk. Merchandise and educational materials will be available. The hub of the conference, for any questions concerns or directions.


Join us in the Hospitality Suite for mingling and snacks in a relaxed atmosphere.

Thursday – 6:00 – 11:00, Friday 9:00 – 11:00 and Saturday 9:00 – 11:00


Casual conference wear is highly recommended for comfort while listening to presenters. During the ‘Celebration Dinner’, semi-formal attire would be recommended with a fresh spring flare!

“To plant a garden…is to ‘Believe in Tomorrow’

–Audrey Hepburn


O.R.S.A. invites all those we call our friends, our family, our acquaintances, our loved ones to come enjoy a celebration dinner. Let’s celebrate via recognition, awards, sharing our vision, past, present and future. Additional Celebration Dinner tickets are available $50.00 per adult or $25.00 per child (3 –10 yrs.). Extra tickets may be added with your registration. Each child or adult with Rett syndrome will be O.R.S.A.’s special guest and will receive a complimentary celebration dinner. Individuals with Rett syndrome will be required to register for the dinner.

“Dining with one’s friends and beloved family is certainly one of life’s primal and most innocent delights, one that is both soul-satisfying and eternal.”

— Julia Child

2018 President’s Message

With a very successful 2017 in the rearview mirror for the Ontario Rett Syndrome Association, we are looking forward to an amazing 2018!  O.R.S.A. is making progress on our strategic plan. The plan includes 4 areas measured for results and outcomes by 2022. These areas are: increasing family networking and support, improving health system relations, creation of awareness strategies and to support organizational transition and stability.

In 2018 we will be offering free lifetime membership to O.R.S.A. with the goal of significantly improving the number of members. There are significant benefits to having increased membership and we plan to fully take advantage of those.  These changes will allow us to grow and flourish into the scientific and educational powerhouse that we can be.

We will also be hosting another Rett syndrome conference in 2018!  Our ‘Believe in Tomorrow’ Conference is being held April 13th to April 15th in Toronto.  Our Conference Committee has all the speakers booked and we are finalizing the details of the presentation topics. Mark it in your calendars because registration will begin shortly.

We are also continuing to work diligently with doctors and researchers in Canada and internationally to create valuable connections with international pharmaceutical companies in an effort to bring a Rett syndrome clinical trials to Canada   A component of this is showing our dedication to research.  After releasing the largest Rett syndrome dedicated research grant in the history of O.R.S.A in 2017, the Hope Fund is currently receiving Letters of Intent for our 2018 Research Grant of $50,000.

None of this would be possible without the support of volunteer board of directors, who put in a lot of thankless hours to ensure that our association is successful and continues to grow and prosper.  It is my privilege to lead this group of people who work together with passion towards a common goal, to make an impact on other people’s lives. Our accomplishments are made possible with the continued effort and support from our members, their families, friends and many others.

Thank you for this continued support.

Kevin Morton


2018-2019 Research Grant


Duration: One year

Funds available:  The Program offers grants for the support of projects with amounts of up to $50,000 (two grants of $25,000 or one grant of $50,000) per year for a period of one year.  Funds cannot be used to cover tuition costs.

Through this process, ORSA 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 society.  This program is provided to support current investigators and encourage new investigators to pursue research in Rett Syndrome.

ORSA 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.

Click below to download

Letter of intent 2018-19

Should you have any inquiries, please contact:

Rick Goodhew

O.R.S.A. Advisory Committee

Ontario Rett Syndrome Association


Save The Date: April 13th – 15th 2018

We are very excited to confirm the date for our next conference!

April 13th-15th, 2018

Holiday Inn (Toronto International Airport)
970 Dixon Road,
Toronto, Ontario
M9W 1J9

Our conference committee is busy confirming speakers and will update you here as details emerge.