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In late 1988 there were five ALS Society Chapters operating in Ontario under the ALS Canada charitable registration number (Toronto, Hamilton, London, Ottawa and Windsor). Representatives from each Chapter came together to form the ALS Society of Ontario for the primary purpose of receiving a service-expansion grant from the Trillium Foundation. With the aid of this grant, the ALS Society of Ontario was founded in 1988 as a charitable organization with the responsibility of providing support services to persons with ALS and their families, helping to raise funds for research and to generate public awareness and education regarding this fatal disorder.
The ALS Society of Ontario continued to work with the ALS Society of Canada through an affiliation agreement signed in 1989. Within a year, the Toronto Chapter separated from the newly formed ALS Society of Ontario to form the ALS Society of Toronto and Area. ALS Toronto incorporated and received its own charitable number in 1989.
Working in relative isolation from ALS Toronto, the ALS Society of Ontario continued to grow and its services expanded. Beginning in 1984, the Muscular Dystrophy Association of Canada, working under an agreement negotiated by the ALS Society of Canada, supplied assistive equipment to people living with ALS. In 1994, the ALS Society of Ontario took over this service and has continued to supply equipment, not covered or only partially covered by healthcare and private insurance, to people living with ALS. The equipment is supplied from loan pools built up by the Chapters and the Society and when necessary, new equipment is purchased.
Volunteers continued to work hard creating and running support groups and Chapters which reached people affected by ALS all across the province. The capacity of services followed suit. The equipment program, for example, provided approximately $71,000 worth of equipment in 1994 compared with $500,000 in 2003. This growth emphasised a need for additional staff to support the Chapters with their development and to ensure that those living with ALS in communities without a local Chapter still had access to services.
To help accommodate the growth, a regional structure was adopted and the first of nine anticipated offices was opened in Ottawa for the Champlain Region in 2000. In 2002, through the funds raised by the first Elizabeth’s Concert of Hope, a
second office was opened in Hamilton for the Hamilton/Niagara/Grand River Region. A third office, for the Northern Region, was opened in Sudbury in 2003.
The development of a regional structure also laid the foundations for a new governance structure for the ALS Society. The size of the Board of Directors was large yet those without an association to a Chapter were still inadequately represented. The new regional structure was used as the basis for the development of the Provincial Advisory Council. Each region elected a representative to the council and the council elected from among themselves five Sector Delegates to sit on the Board of Directors.
The start of the new millennium also saw the start of a new national fundraising initiative which dramatically increased the Society’s capacity to provide services to people affected by ALS. In 2001, eight cities across Canada participated in the first Walk to D’Feet ALS in Canada. Four of the walks took place in Ontario and contributed $301,000 to the total $556,000 raised.
In December 2002, the ALS Society of Ontario and the ALS Society of Toronto and Area visited Queen’s Park for the first “Day in the Park” advocacy event to educate all political parties about ALS, the Society and two key issues facing those affected by ALS. The Day in the Park was a momentous occasion not only for the awareness it brought to ALS at the provincial level of government, but also because both the ALS Societies of Ontario and Toronto attended as one society.
Beginning in 1999, the staff and volunteers of the ALS Societies of Ontario and Toronto started to develop strong working relationships. There were other joint projects over the four years including parallel client services programs, policies and procedures and funding for the Assistive Technology Clinic.
In May 2003, the ALS Society of Toronto began the steps required to merge with the ALS Society of Ontario. On January 1, 2004, the Toronto area became a regional unit similar to those in Ottawa, Hamilton and Sudbury operating under the ALS Society of Ontario. Two additional seats were added to the Provincial Advisory Council and the Board of Directors to ensure representation of those living in the Greater Toronto Area.
In its first sixteen years, the capacity of the ALS Society of Ontario to serve those affected by ALS has developed and increased. The coming years promise to hold as much progress as we continue toward the day when the work of the volunteers, staff members and donors are no longer required.