Ontario RETT SYNDROME Association

O.R.S.A.’s Founding Board meeting was held in Toronto in February, 1991. Attendees who constituted the Founding Board were Terry Boyd from Eastern Ontario, Joseph Moriceau and Jo Field from Toronto, Gene Valeriote and his wife Mary from Halton-Peel, Dave Harrod from Niagara and Jim Chism as a Quebec observer. In addition, Eugene Bradley, who wasn’t at the first meeting, represented Kitchener-Waterloo and C.R.S.A at the second meeting in May. By the first AGM in June, 1992, incorporation, charitable registration, bylaws and a Chapter structure were in place. In the first five years, annual Conferences/Workshops were hosted by the Chapters, first in Niagara, then Toronto, Ottawa, Kitchener, and again in Toronto and there were numerous family get-togethers. Drs. Patrick MacLeod and Daune Macgregor agreed to serve on a Professional Advisory Board.

By the time of the second AGM, net assets and cash flow had increased ten-fold, with the Toronto Chapter and especially the Eastern Ontario Chapter administering funds comparable to those of the provincial office. There was a logo and 30 Rett family memberships. By the end of ten years, there had been eight major Conferences/Workshops and there were over one hundred members. An epidemiological study had been funded at Queens, as well as medical research at the University of Victoria. After the discovery in 1999 that mutations in the MECP2 gene of the X-chromosome are strongly correlated with the Rett syndrome phenotype, the Ontario Rett Syndrome Association, by the end of its first decade had provided over $30,000 in research funding for four genetic projects.

Gene Valeriote remained President until his family moved from Ontario in 2002. From the beginning, his computer skills quickly made the organization appear very professional and established. He handled the membership records, produced merged mailing files, official-looking personalized receipts and letters, reports to the Public Trustee, the Canadian Rett Syndrome Newsletter and an O.R.S.A. website. He even did the accounts and produced the financial statements at first.

After Sally-Ann Garrett took over the accounts, they became increasingly complicated as the Chapters got involved in more fund-raising and Chapter activities. In 1996, Mary Gemmiti became O.R.S.A.’s Treasurer for the next ten years. Mary put O.R.S.A.’s accounting on a solid professional basis and she took on the added burden of membership duties. The Newsletter was published by Gene and Mary Valeriote until 1999. Teresa Lidsle and Terry Boyd then briefly took it over until Sherry Lawrence became its editor and has published it ever since.

During most of those years there was very little Rett syndrome research going on in Canada and, although the bank balance grew, there was little motivation to undertake large fund-raising events. We had seen the Canadian Association acquire a crippling financial obligation, because of an overly ambitious Mount Everest fund-raising project that severely restricted its activity and O.R.S.A. didn’t want to suffer a similar fate. If not for C.R.S.A.’s problems, O.R.S.A. would probably never have been started and our energies would have been directed instead to supporting the same objectives but within the Canadian RSA. Parents had enough to deal with at home and needed support there. They didn’t need the added stress of fund-raising. They needed the direct personal support of other families, who had been there, and they needed information.

The information came through the newsletter, the Conferences and the Resource Centre, for which O.R.S.A. took over national responsibility from C.R.S.A. Except for the Conferences, this kind of family support didn’t require huge amounts of money and there were no obvious research capabilities to support. It was a low cost organization, with Board members and volunteers donating their time and, in many cases, expenses. The website was free, except for the small cost of a domain name, because it was housed on a personal server account and the Conferences generally paid for themselves or were given a small subsidy to make up the shortfall.

Then, that all changed after 1999 because of the discovery of the gene. Dr MacLeod established the Canadian Rett Syndrome Consortium in 2000 and O.R.S.A. began seed funding of his research in Victoria, including a project to look for the mutations not yet found in 20% of Rett girls, as well as a small project by Dr Siu at Western. Breakthrough results were reported in 2004 by Dr. Berge Minassian and other Toronto researchers, who were the first to report finding mutations in exon 1 of MECP2 (in Elinor Valeriote). Even though this did not lead to explaining more than a small proportion of the missing mutations, with Patrick’s promotion, it set off an explosion of interest and activity by Canadian researchers, and also led to Rett Clinics being established in Toronto and Ottawa.

A lot has progressed since the beginning: new energies and new reasons to motivate members and friends to achieve far more in our lifetimes than we dreamed would be possible when we began. Fund raising has exploded with the Run 4 Rett, several golf tournaments, Skydiving, Corn Roasts. The main problem now is not how to raise money but how to spend it effectively. There are a lot of dedicated and able researchers in Canada, who can put it to good use.