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). HSC’s goal is for a world that is free from Huntington Disease. HD is an inherited brain disorder that affects one out of every 1000 Canadians. Every child with a parent who has HD has a 50% chance of inheriting the disease themselves. HD has multiple stages with symptoms progressing from decreased ability to recall information to losing the ability to manage the activities of daily living. HSC runs three main programs based around family services, research and public awareness and education

HSC’s family services program supports individuals, families, and professionals who are dealing with the progression of HD. The program works to maximize the quality of life for people living with HD and supports over 15,000 people annually. Some of the services provided are information and education, referral to community resources, and individual advocacy. The charity has 14 resource centers with 24 support groups that meet on a regular basis.

The charity’s research program funds projects designed to reverse, slow, or prevent the progression of HD. In F2018, the charity spent over $1m funding research projects. HSC awarded two $150k grants to fund HD research, one of which resulted in the development of a detailed 3D model of the Huntington protein.

HSC’s public awareness and education program informs people about HD and advocates for people living with the disease. In F2018, HSC had three million views on social media and sold over 20 thousand amaryllis flowers which are the official flower of HSC.

Results and Impact:

Huntington Society of Canada supports clinical trials in Canada which have made promising discoveries in F2018. The drug used reduced huntingtin proteins by 40 to 60 percent over the course of the trail and the study will be proceeding with phases two and three.

HSC’s advocating was successful with the passing of the Genetic Non-Discrimination Act on May 4, 2017 which protects one’s genetic test information from being shared without written consent from the patients.

Financial Review:

Huntington Society of Canada is a medium-sized charity with donations and special events revenue of $4.1m in F2018. Administrative costs are 12% of revenues and fundraising costs are 15% of donations. Per dollar donated to the charity, $0.73 go to the cause. This is within Ci’s reasonable range for overhead spending. HSC’s funding reserves of $4.4m include of which $1.9m are donor-endowed funds. Excluding donor-endowed funds, the charity’s reserves can cover program costs for 5 months.

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

Updated on June 6, 2019 by Stefan Tetzlaff.