Huntington Society of Canada

About Huntington Society of Canada:

Founded in 1973, Huntington Society of Canada (HSC) helps people and families affected by Huntington’s disease (HD), an inherited brain disorder that affects one in every 1,000 Canadians. Huntington's disease is dominant – children who have a parent with HD have a 50% chance of inheriting the disease. Symptoms usually appear between age 30 and 50 and include memory loss, cognitive decline, loss of muscle control and emotional changes. In its later stages, people with HD require professional nursing because they can no longer perform daily activities. HSC has 3 core programs: family services, research, and education and awareness.

Huntington Society of Canada’s Research program funds research projects to reverse, slow or prevent HD progression. HSC runs two grant competitions – the Navigator research program grant and the New Pathways research program grant. In F2016, HSC funded one researcher through Navigator and one researcher through New Pathways. In 2016, HSC teamed with Brain Canada and launched the “Creating HD Clinician-Scientist-to-Patient Virtual Networks” Multi-Investigator Research Initiative. This 3-year project will connect doctors, researchers and HD patients to speed up the discovery-to-effective-treatment cycle for slowing HD progression.

Huntington Society of Canada’s Family Services programs serve over 15,000 people every year. HSC has 16 HD clinics across Canada – families can see neurologists, genetic counsellors and HSC social workers at these clinics. The Youth Mentorship program matches youth who live in families affected by HD with an older peer. The program ran as a pilot in F2014 and HSC reports that it was very successful. The charity finished training its third group of mentors in 2016, increasing the total number of mentors by 40% in Canada.

In its most recent 2016 annual report, Huntington Society of Canada reports that its education and awareness activities resulted in a 28% increase in Facebook followers, an 18% increase in Twitter followers, and an 87% increase in website page views.

Huntington Society of Canada’s Advocacy program saw success when Canada’s federal government passed Bill S-201 on April 14, 2017. The bill prohibits and prevents genetic discrimination, which people with HD face from employers, insurers and when trying to participate in clinical trials for disease treatments.

Financial Review:

Huntington Society of Canada is a medium-sized charity with donations and special events revenue of $4.2m in F2016. Administrative costs are 9% of revenues and fundraising costs are 14% of donations. Per dollar donated to the charity, $0.77 goes to the cause, which falls within Ci’s reasonable range for overhead spending. HSC’s funding reserves of $4.6m include $1.9m in donor-endowed funds. Excluding donor-endowed funds, the charity’s reserves can cover only 87% of annual program costs.

This charity report is an update that is currently under review by Huntington Society of Canada. Comments and edits may be forthcoming.

Updated on May 23, 2017 by Katie Khodawandi.