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

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

RESEARCH GRANT APPLICATION PROGRAM – 2018-19

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

goodhew@rogers.com

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.

Light Canada Purple October 29 for Rett Syndome Awareness

October 29th has been designated as Rett Syndrome Awareness Day.

Our goal for that day is to light up the nation purple! This includes some iconic Canadian monuments such as the CN Tower, Niagara Falls and the Toronto sign.

 

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 kcongram@rett.ca and watch our Facebook and Twitter accounts for lots of updates throughout the month.

Run 4 Rett 2017 – Sunday September 17

The 2017 Run4Rett will be held Sunday September 17, 11:00 a.m. at Richmond Green Park, 1300 Elgin Mills Rd. E., Richmond Hill, ON, L4S 1M5.

The 13th 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 14)

Download printable pledge and registration form

DONATE NOW

We will be hosting a silent auction at the race site. Check out the huge list of items available to bid on. There is something for everyone, especially sports fans:

 

Silent Auction Items