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!

https://www.indiegogo.com/projects/carrying-a-dream#/

The 2018 Run4Rett will be held Sunday September 16, 11:00 a.m. at Richmond Green Park, 1300 Elgin Mills Rd. E., Richmond Hill, ON, L4S 1M5.

The 14th 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 now (closes September 13)

Download printable pledge and registration form

DONATE NOW

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.

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!

https://www.paintnite.com/events/purple-tree-in-moonlight-at-black-swan-pub-10087075

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

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
Location:    
The Greens at Renton
969 Concession 14
Simcoe, ON  N3Y 4K3
www.greensatrenton.com

Registration is now closed.

View list of silent auction items.

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

CONFERENCE INFORMATION

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

REGISTRATION

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

LOCATION

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

or

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

CONFERENCE HIGHLIGHTS

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!

PROFESSIONAL NETWORKING

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.

FRIDAY FAMILY SOCIAL NIGHT

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!

EXHIBITOR FAIR

Visit the Exhibitor Fair located in the Cabinet Room.

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

RESOURCE CENTRE

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.

HOSPITALITY SUITE

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

DRESS ATTIRE

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

THE CELEBRATON DINNER

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

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 13^th to April 15^th 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