We at the Rett Syndrome Society of BC (RSSBC) would like to thank you for allowing us to attend not only your “We ‘R’ family” conference but also the Friday evening research meeting. RSSBC was able to make connections with local researchers, physicians and even a couple of families. However what we truly appreciate was the provincial organization meeting.
As a new organization just starting our second year we value all the information that was presented at these meetings. We were able to get know other Provincial representatives and trouble shoot common challenges that each province is currently faced with. It was great to see each organization all working on not only their own organizational goals but also to making a commitment to working together towards larger national goals such as the launch of the Canadian Rett Syndrome Registry.
The new registry is renewed hope for families within RSSBC. Our families have been under serviced for years and most have given up the thought of a cure within Canada. The Registry show to families that it’s possible and that we in BC and across Canada are doing everything we can to support them and to ensure a fulfilling future for their daughters
We feel proud to have financially supported the registry and look forward to working together again in the near future.
President of the Rett Syndrome Society of BC
While in Hamilton, we crossed paths with Dr. Rastegar, a researcher from Manitoba who wants to help re-‐establish our association and continue networking with specialists across Canada. The conference also gave us the ability to meet other provincial associations. I believe there is “strength in numbers” and believe if we continue to network across Canada, we will all benefit and grow stronger.
Even though 1 in 10,000 children are diagnosed with Rett syndrome, it is still relatively unknown in Manitoba. I hope to see all the chapters across Canada work together to fund the Canadian Rett Syndrome Registry that O.R.S.A. has worked so hard to create. Because of O.R.S.A.’s continued dedication and involvement, we now have associations nationwide willing to network and make Rett syndrome front and center in Canada.
Manitoba Rett Syndrome Support Group
Being able to attend the O.R.S.A. “We R Family” conference has been a great experience for me as a mother of a child with Rett Syndrome and as the president of the Saskatchewan Rett Syndrome Association. It was a great honor and pleasure to meet so many doctors, therapist, researchers and parents who are all working extremely hard on one main goal. I have gained so much knowledge about what is happening in Canada in regards to research and developments. It truly was an experience I had not expected to be so fulfilling. I look forward to many more Canadian conferences that hopefully joins all Canadian associations together in the near future. I left this conference with the comfort and feeling that we truly “R Family”. Thank you O.R.S.A for all your hard work, it really did pay off.
Juanita Stamp- Hillier
President of the Saskatchewan Rett Syndrome Association
When my daughter was diagnosed with CDKL5 disorder four years ago a CDKL5 organization did not exist in Canada so the name the neurologist provided was O.R.S.A for information and support. I called the number and was greeted with warmth and open arms despite my child not having a diagnosis of Rett syndrome. Because the symptoms of CDKL5 and Rett syndrome overlap, CDKL5 is considered a Rett-like disorder.
O.R.S.A’s hard work and dedication to the cause has inspired me to do the same as I am now the president and founder of CDKL5 Canada. Our organization has attended their last two conferences and has met numerous researchers and clinicians through it. Thank you O.R.S.A for all your hard work and dedication, keep inspiring and keep hoping.