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

2018 Hope Fund Grants Awarded

The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two $25,000 Research Grants from the Hope Fund for 2018. This is the fourth year in a row that the Hope Fund has awarded grants totaling $250,000!

The first $25,000 grant was awarded to Dr Mojgan Rastegar from the University of Manitoba. Dr Mojgan Rastegar plans to further study the role of metformin (a current and commonly available drug, used most frequently in the treatment in diabetes) as a potential therapeutic agent in the treatment of Rett Syndrome. Metformin is thought to possibly stimulate the key system that is underactive in Rett Syndrome. There is already a considerable amount of preliminary data to support this line of reasoning. This study aims to help take this “to the next level”. Dr Rastegar has been a prominent Rett Syndrome researcher for a number of years, and is a past grant winner who has shown passion, dedication, and persistence toward Rett research.

The second $25,000 grant was awarded to Dr Kerry Delaney to study neural connectivity in mosaic brain tissues using newer optogenetic techniques, hoping to shed further light on the clinical implications of the real-world heterozygosity in female Rett syndrome brains. It is hoped that this preliminary study may lay the foundation for future studies and for larger CIHR grant applications. It also will help to bring new researchers into the Rett field. One reviewer has described this proposal as being “at the cutting edge of technology, and addresses an area that until now has remained untouchable”.

These applications were received and evaluated by O.R.S.A.’s Research Advisory Committee that comprised impartial and prominent neurologists, geneticists and scientists from across Canada.


Paint Nite Event in Burlington – July 12

Join us for an evening of fun and creativity in support of the Ontario Rett Syndrome Association.

All materials provided. No experience is necessary.

Space is limited so please sign up ASAP!


Thur Jul 12 2018, 7:00 pm
Black Swan Pub
4040 Palladium Way
Burlington, ON

14th Annual Rett Classic

Saturday May 26th, 2018 – 1:00 PM

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

Registration is now closed.

View list of silent auction items.

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