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

2015 Membership Renew Now!

It is time for the renewal of your O.R.S.A. membership. The Ontario Rett Syndrome Association continues to expand and develop in new ways to support its members. Membership fees help make this possible!

2014 was an exciting year to be a part of the Ontario Rett Syndrome Association. Some of the highlights of our year were:

  • Hosted the We “R” Family Conference with over 190 attendees traveling from 8 provinces to participate in the bi-annual educational event.
  • Launched the Canadian Rett Syndrome Registry. This registry is important to families across Canada as future drug trials for Rett syndrome can only be implemented in Canada through an approved registry.
  • Creation of The Hope Fund that exists solely for research. 100% of all these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome. The Hope Fund is releasing a $50,000 research grant in early 2015.
  • Hosted the first ever Canadian Rett Syndrome Symposium with 25 Canadian scientists, clinicians and provincial representatives. The symposium fostered collaboration between these individuals who have an interest in Rett syndrome and was funded by a grant from Canadian Institute of Health Research.
  • Coordinated the first ever National Rett Syndrome Association meeting, bringing together 6 provincial associations to discuss collaboration on current and future initiatives.
  • Hosted educational workshops, focused on communication and literacy strategies for individuals with Rett syndrome. These workshops were primarily funded by a grant from the Edwards Charitable Foundation.

O.R.S.A. is very proud to provide annual financial contributions towards the three Rett Syndrome Clinics in Ontario in order for them to continue to support the individuals living with Rett syndrome and acts as the representative for Rett syndrome nationally on Neurological Health Charities Canada.


As a member of O.R.S.A. you will receive access to the most up-to-date information on Rett syndrome and receive preferred rates at the bi-annual conference and/or any workshops offered. New parent/caregiver members receive a new parent package containing many great resources.


None of the above accomplishments would have been possible without your support. So please take a moment to renew your membership. If you are a family with an individual with Rett syndrome, who cannot afford the dues, you can still become members by indicating this on the form. Each and every membership matters!







O.R.S.A. Board of Directors

Who Is O.R.S.A.?

The Ontario Rett Syndrome Association is a volunteer, not-for-profit charity.




What Is Rett Syndrome?

Rett syndrome (RTT) is a neurodevelopment condition.                                                                     .

Characterized by the loss of spoken language and hand use, coupled with the development of distinctive hand stereotypies. This disorder is seen in infancy and occurs almost exclusively in females. It is usually caused by a mutation of the MECP2 gene on the X chromosome. Rett syndrome is found in all racial and ethnic groups throughout the world. It affects one in every ten thousand live female births. Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and gait. A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other more common medical issues encountered include epileptic seizures, muscle stiffness, osteoporosis and scoliosis. Despite its multiple handicaps, Rett syndrome is not a degenerative disease. Many individuals with Rett syndrome live long into adulthood. There is currently no cure.


Duration: One year

Funds available:  Two grants ($10,000 and $15,000)
Or may be combined for one grant of $25,000

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.

Should you have any inquiries, please contact:

Rick Goodhew
O.R.S.A. Advisory Committee
Ontario Rett Syndrome Association
phone     (519) 203-0252
fax     (519) 631-2633
email    goodhew@rogers.com

ORSA LOIF 2011-2012