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

2020 Spirit Award: Mark Swartz

Over the next several weeks, O.R.S.A. will be presenting our 2020 award winners. Typically our awards are given out during our bi-annual conferences, but we weren’t able to hold an in person event this year.

The Spirit Award is given in recognition of a significant contribution in raising awareness for Rett syndrome, through a combination of years served as a member, fundraiser and generous supporter.

The first Spirit Award for 2020 is presented to Mark Swartz. Mark is a long-time donor to Run4Rett. He has contributed most of the auction items, including the popular and unique sports memorabilia. Due to COVID-19, this year’s run was held virtually. Mark once again donated all the items and he offered his advice and assistance towards the success of a virtual auction that was run throughout October awareness month.

Thank you Mark for your ongoing generous support to O.R.S.A.!

Pictured below is board secretary and Run4Rett race director Sherry Lawrence presenting the Spirit Award to Mark with his niece Alyssa.

Application for 2021 Board of Directors Now Open

The Ontario Rett Syndrome Assocation (O.R.S.A.) wishes to invite interested candidates to submit their application to join the O.R.S.A. Board of Directors in 2021. This is a great opportunity to start the new year off right: helping to achieve a better future for individuals affected by Rett syndrome and their families.

We are particularly interested in hearing from individuals whose experience and skill set includes a combination of the following:

  • Grant writing
  • Fundraising and special events
  • Health policy development
  • Public relations and communications
  • Advocacy on a provincial/federal level
  • Nonprofit, governance, management or administration experience

Application Deadline is December 31, 2020

Board Member Expectations:

  • Support the organization’s mission, purpose, goals, policies, and programs while knowing its strengths and needs.
  • Attend bi-monthly board meetings (via teleconference) and one or two in-person meetings throughout the year.
  • Prepare for and participate actively in conference calls, telephone and email communications between these meetings as necessary.
  • Serve actively on committees.
  • Contribute to activities and events hosted by the organization whenever possible.
  • Be fully apprised of O.R.S.A. policies and positions to serve as a spokesperson when requested and feasible.
  • Suggest volunteers the board who have attributes and commitment to make significant contributions to the work of the O.R.S.A. and the progress of the organization.

Please submit your application to kmorton@rett.ca.

Research Grant Application Program 2021-2022

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.

Request for Applications for the Research Grant Program

Letter of Intent Form

Should you have any inquiries, please contact:

Rick Goodhew

O.R.S.A. Advisory Committee

Ontario Rett Syndrome Association


ARCH Study Update

While GW Pharmaceuticals did not have any active sites or Canadian patients, the Ontario Rett Syndrome Assocation (O.R.S.A.) was actively supporting them to establish a Canadian location.  While this news is disappointing, it is understandable given the current COIVD-19 implications across the world.  O.R.S.A. remains committed to bringing Rett syndrome Clinical Trials to Canada to ensure that individuals with Rett syndrome are enabled to achieve their fullest potential and enjoy the highest quality of life within their community.

Online Auction – Now Closed

Thank you to all that have participated in our very first Online Silent Auction for the Run4Rett. This year due to COVID-19 O.R.S.A. decided to host the 16th Annual Run4Rett virtually.

The auction is now closed!

Thank you to all our Supporters!

Click button below to take a look at the 16th Annual Run4Rett Silent Auction.