This is the most exciting and promising time within the Rett syndrome community since the MECP2 discovery in 1999. There is a greater understanding of this complex disorder. Increased research is being conducted in Canada and around the world to find a treatment and a cure. Drug trials have commenced and will be possible in Canada due to the establishment of the Canadian Rett Syndrome Registry. There has been an explosion of information regarding the use of eye gaze technology for children and adults with RTT. The endearing term “Silent Angels” may be unnecessary as more and more utilize this communication system. There are now three RTT Clinics in Ontario. Canadian scientists, clinicians and provincial associations will come together at the Canadian Rett Syndrome Symposium, concurrent with the We “R” Family conference. National Rett syndrome education and collaborations to support those living with RTT in Canada are now at the forefront. The We “R” Family conference will allow family members, educators, medical professionals, support agencies and others to listen to presentations from RTT experts. The opportunity for families to attend a private communication and/ or medical clinic is unique to an O.R.S.A. conference. Every biannual conference allows for important connections to take place. The focus of the 2014 conference is celebrating families: our large O.R.S.A. family, the Canadian RTT family connections and each family who is privileged to have a child with RTT. We encourage school systems, support agencies, treatment and rehab centres and health professional to consider funding personnel to attend this informative conference. The information and professional connections gained will assist in the knowledge needed to support an individual with Rett syndrome. Families are encouraged to bring their child’s entire team to the conference. The knowledge gained will assist families when advocating for services and programs for their child. O.R.S.A. has made the conference registration fee as low as possible. Each biannual conference is subsidized greatly by the association. We are ready to be your host for an informative, interactive and memorable conference. You are invited to the 2014 We “R” family conference.
See You in April! Terry Boyd & Shari Hamelin Conference Co-Chair