Background to the Super Fund
In 2021, when ALS Action Canada ran its first fundraising campaign in BC (the ICBC Rebate Challenge), it opened a Donor Advised Fund with Charitable Impact. At the time, ALS Action Canada did not have charitable status, which meant that direct donations would not receive tax receipts. Opening an account with Charitable Impact enabled tax receipts to be issued to donors, and provided a CRA-compliant accounting system, for free.
The original intent of the 2021 fundraising campaign in BC was to provide funds to organizations best placed to advance the research or advocacy required to end ALS. Re-branding this Fund as the ALS Super Fund, rather than an account for ALS Action Canada, enables the realization of the original goal: supporting both the work of ALS Action Canada, and the work of charitable organizations and projects with the common goal of ending ALS.
The Super Fund is a Donor Advised Fund, owned by Charitable Impact, which assumes responsibility for financial accounting and reporting. Charitable Impact has a registered Foundation which is CRA compliant and issues tax receipts automatically to all donors. Charitable Impact does not make funding disbursement decisions - such decisions are the responsibility of the Super Fund administrators.
The Super Fund administrators are currently representatives of ALS Action Canada, including the Board Chair and Treasurer. Accounts can have as many administrators as they decide, and decision-making authorities are self-determined by administrators themselves (not by Charitable Impact). Adding several PALs (patients with ALS) and CALs (caregivers) as administrators would help ensure that the Super Fund is genuinely patient-led.
Decision-making on how the funds would be spent is guided by an Advisory Council of ALS experts - representatives of patients, caregivers, medical practitioners, researchers, and ALS organizations. This Advisory Council plays an advisory role only. They do not have the authority to disburse funds. They also have no legal liability in terms of Fund management (even the administrators are de-risked, with all legal liability falling to Charitable Impact). The Advisory Council is selected by the administrators of the Super Fund, and their role is essentially creating a plan to end ALS: prioritizing the actions in Canada most important to ending the disease.
How is the Super Fund Structured?
How does it work?
How is the Advisory Council selected?
Selection of the Advisory Council begins with people with ALS (pALS). Who do people living with the disease trust to lead the fight against ALS? It is not an accident that the Super Fund began with ALS Action Canada – the country’s first patient-led movement. People with ALS have discussed the following criteria for Advisory Council members:
Between 10-13 members
Diverse perspectives, including patients, caregivers, medical practitioners, researchers, and ALS organizations
Individuals must have lived experience with ALS and/or deep knowledge of the disease
Individuals must be committed to the cause of ending ALS.
The Advisory Council will be asked to shape a national plan to end ALS. Specifically, Advisory Council members have three responsibilities:
What are the responsibilities of the Advisory Council?
1.
Identify and prioritize the actions most critical to the cause of ending ALS.
To do this, the Advisory Council will create a “Theory of Change” about how to best navigate from our present situation to a world without ALS.
Currently, the ALS Super Fund is focused on:
a) Cutting edge research, both scientific and demographic
b) Ensuring equitable access to trials and treatments
c) Amplifying the voices of patients, raising awareness, advocating for systemic change.
2.
Identify charitable organizations or projects best placed to implement the actions identified.
3.
Analyze results from implementing organizations and share insights.
