Ontario Rett Syndrome Association

As we reach the end of 2011 it is time to reflect on this past year.  Once again, it has been a very productive and busy year for the association. Research funding was awarded to Dr. Finkelstein at Sick Kids. Members of the board participated in provincial and federal advocacy events to further education about Rett Syndrome and the needs of caregivers and those living with the condition.  Three regional social events were held and well attended. Committee and board member job descriptions were developed and approved.  Local chapters were disbanded and the new Regional Outreach Committee was established with great enthusiasm.  

The association’s announcement to fund and support the development of the Canadian Rett Syndrome Registry was very exciting. This commitment is one giant step towards the preparations required for future drug research trials in Canada.  For the first time there will be data on how many children and adults with RTT live in Canada.  The natural history of each individual will allow for clinicians and researchers to understand more about this disorder.  In turn, families will have better information for assisting their loved one with RTT.  

2012 is shaping up to be a very eventful year.  O.R.S.A.’s rebranding and new printed materials will be revealed in late January.  The Building Healthy Homes Conference will be held on April 27th to 29th at the Delta Meadowvale Hotel in Mississauga, Ontario. The pre-conference events include a medical symposium which will be held the morning of April 27th in Toronto to further educate medical professionals.  On Friday afternoon, private clinics will be held to allow families to meet with RTT experts. The entire conference package will be in the mail by early February.

O.R.S.A. is proud to sponsor the second Canadian Rett Syndrome Research Scientific meeting on Thursday, April 26th, 2012. The last event of this level was held in Vancouver, BC in 2006. Researchers from across Canada will come together to share their RTT research projects.  This event will allow for future collaboration amongst the Canadian research community.  The outcomes of this exciting meeting will be shared at the conference.  

For twenty years, the Ontario Rett Syndrome Association has been serving its membership with great dedication.  I wish to thank all those who have supported O.R.S.A. as board members, volunteers and donors. We thank you for your support.

On behalf of the board of directors, I would like to wish your family happy holidays and a healthy new year.

 Terry Boyd

President O.R.S.A.

We would like to thank everyone who participated, volunteered, donated or sponsored  to the  “7th Annual Silent Angel Golf Tournament”.   The tournament was a huge success, and we  were able to raise $11,000 for our Silent Angels.       The participants had terrific weather for the day and the food was once again excellent.  The Willow’s Golf Club always manages an excellent meal and hall for the tournament and we thank you.

Thank you to all of those that participated, volunteered, organized and supported the 2011 Run4Rett.  Over $40,000 was raised.