ALS Canada and ALS Ontario are Combining Organizations - Q&A

The boards of ALS Canada and ALS Ontario have announced that the two organizations are to be combined to sustain and enhance client services in Ontario and in Canada and to fund and administer the national research program.

With this combination, our work will be focused on help for today and hope for tomorrow. Help for today consists of providing the equipment and support services to those living with ALS needs on a continual basis. Hope for tomorrow is expressed through finding a series of breakthroughs in research. The only way to do that is to secure more funding together; every donation makes each day the best possible for those living with ALS while supporting research into effective treatments and, ultimately, a cure.

Why was the decision made to do this now?

A window of opportunity presented itself with a change in leadership at ALS Ontario and with a number of senior positions being open in both organizations. ALS Ontario was also seeing an increase in demand for service provision and wanted to expand the resources available to provide the needed support to the ALS community.

What is the mandate of the new organization?

The mandate of the new organization is to provide client services for Ontario; support a national research program; support the federation of ALS societies across the country; lead nation-wide fund development programs; institute a nationwide awareness program; develop an advocacy strategy to advance the needs of the ALS community and institute standards of care across the country.

Will ALS Canada continue to focus on research?

More funding is needed to support the research community and by merging the two organizations, we will be better able to do so. Currently, basic research is receiving funding and the organization needs to fund more bedside research. With the new revitalized and stronger united organization, more funding will become available to fund this kind of research.

How will this affect client services in Ontario?

It is business as usual in terms of client services in Ontario. No changes in the immediate are expected in the area of client services.

In putting the two organizations together, the commitment has been made to continuing to support client services in Ontario, to provide supports to the provincial partners and to continue to administer the national research program. A transition board to provide oversight to this change has been established with its membership drawn from the former ALS Ontario board. In addition, three advisory structures to the transition board have been established, one in each of those three areas. In practice, this means that the existing support services committee under the leadership of Nigel Van Loan will continue to be active, providing guidance both to the board and to management.

Will I be able to designate whether my donation goes for research or client services in Ontario?

Yes. The ALS Society remains committed to honouring donor wishes and all donors will continue to be able to designate their donation or to make an undesignated donation, leaving it up to management to determine the areas of greatest need.

Systems to ensure that donation designations are identified and implemented according to donor wishes are in place and monitoring these systems has been identified as a specific responsibility of the transition board.

Will this affect national programs currently provided to other provincial societies?

No. ALS Canada will meet its current commitments to other provincial societies. Moving forward, the provincial societies will be more engaged in setting these priorities. It is anticipated that through this process, there will be greater sharing of what works and doesn’t work, thus enriching the work of each of the provincial societies, including the client service work being undertaken in Ontario.

How will ALS Ontario client and fundraising programs be distinguished from existing national programs?

ALS Ontario programs will be the only programs actually delivered in a specific geography by the combined organization. Hence the learnings from these programs will inform the development of tools and products for the rest of the Federation. Likewise, as priorities are established in terms of national initiatives, the ALS community in Ontario will benefit from the experiences of others across the country.

From a fundraising perspective, all monies received that are designated for ALS Ontario programs or research will be applied accordingly.

How will ALS Ontario be branded moving forward?

There will be one strengthened ALS presence in Ontario moving forward. Input from donors indicates that there is greater resonance with a combined ask from the ALS Society. Stronger presence in Ontario will also enable greater success and penetration with public awareness campaign, education program and outreach to politicians and bureaucrats. Monies received designated for ALS Ontario client service or for research will be allocated accordingly.

What benefits are expected from this change?

In performing due diligence, a number of alternative models were reviewed by the steering committee. Expected benefits identified from this model include:

· Greater success in fund development through presenting one brand to the market, together with a combined ask

· Some cost savings that can be used for mission activities

· Critical mass that will enable more effective education, awareness and advocacy programming

· The opportunity to establish a centre of excellence in service delivery that will benefit the whole of the ALS community across Canada

· Strengthening of the Federation by creating one stronger organization as an anchor in Ontario and which will present potentially a different structural option for other provinces with limited resources thus enabling the ALS community more broadly, to be served better

· The ability to attract and retain high performing staff given larger and more challenging roles

Can you give specific examples how this will benefit the ALS community in Ontario moving forward?

There are a number of ways in which the change is expected to benefit the ALS community in Ontario. First, through having one co-ordinated fund development presence in the market, it is expected that additional funding will be generated. Thus, additional resources will be available over time. In addition, by placing services and research in one organization, there is more ability to influence the research agenda. This could result in more research being undertaken into quality of life issues, e.g., related to equipment or healthcare service delivery models; issues that are meaningful to the ALS community in Ontario in addition to the research related to finding a cure.