At the Huntington Society of Canada, our goal is to provide the highest level of hope for families affected by Huntington disease (HD) by funding crucial research and helping them live their best possible lives by providing services, education and advocacy.
A world free from Huntington disease.
To improve the quality of life for those affected by Huntington disease.
We will address our mission through the oversight and facilitation of excellent support services, providing access to the best and most up-to-date educational resources, increasing national and global awareness, advocacy and investing in promising research.
Goals of the Plan
1. Expand Support for All People in Canada Affected by HD
Huntington Society of Canada (HSC) is rooted in providing quality emotional support, up-to-date educational material and social connections for individuals and families affected by HD. Our Family Services team of social workers across the country continues to oversee the provision of support services in homes, communities and clinics across Canada. Much more still needs to be done as there remains many individuals and communities that are isolated, insufficiently informed and in need of support. We will expand our programs to include outreach and strategies to identify, engage, and support underserviced communities.
2. Promote and Fund Research
HSC has a long history of funding research. In addition to supporting large trial and multicenter studies, our strategy to fund investigators early in their career plays an integral role in developing HD specialists across Canada. Innovative research, including Phase III clinical trials, requires a growing network of clinicians and researchers. Supporting clinicians and researchers who have identified HD as an area of interest is critical to ensure that those affected by HD can rely on professionals with HD expertise and benefit from the progress that research has afforded.
In addition to direct funding, HSC also promotes knowledge translation through our website and in-house communication vehicles including Horizons, Strength and Knowledge and other educational resources. We also provide support for international vehicles that focus on explaining scientific data in laypersons’ language. The rapidly evolving HD environment calls for increased dissemination of new information to keep stakeholders current.
3. Support Access to Clinical Trials
HSC’s investments in clinical trial readiness, stemming from the enthusiastic and courageous participation of our HD families in observational studies and clinical trials, has resulted in a large number of trial sites within Canada. Our collective investments to date have positioned Canada as a global leader for HD clinical trials.
More recently, therapeutic trials on drugs that affect the root cause of HD have emerged, palpably changing the HD landscape. The potential for an effective drug therapy has provided the impetus for an increased number of at-risk individuals to self-identify and reach out to HSC for the first time. We continue to see a steady increase in queries in regard to clinical trials, predictive testing and related information stemming from such innovations in HD drug development. To ensure that Canada continues to be a global leader for HD clinical trials, HSC is committed to strategically devoting the necessary resources for clinical trial readiness.
4. Expand Advocacy and Awareness Initiatives
HSC’s leadership role in shepherding the Genetic Non-Discrimination Act (GNA) from its inception through to its passage into law has been applauded both nationally and internationally. HSC takes great pride in the fact that the GNA is now the law. At the same time, we recognize that further work is required as we face the challenges of those who oppose the legislation and seek to overturn it.
We have identified that HD families often do not receive the support services offered to those with other neurological diseases due the lack of understanding of HD. We plan to educate these families on how to advocate on their own behalf at the local, provincial and national levels.
HSC is committed to building a national network of advocates for HD-related issues. An enhanced staff, working in conjunction with skilled volunteers, will further enrich the advocacy & awareness efforts of the HD community.
5. Increase HSC’s Capacity to Serve
The consummate and relentless support of the Canadian HD community has enabled HSC to thrive and achieve many of our goals and objectives. Successfully addressing the growing needs of the HD community means that we have to expand our capacity to serve. HSC will plan and execute new fundraising initiatives to support this evolution. Through engagement with our established supporters, donors and volunteers, we will expand our current network through strategic and targeted outreach. Additionally, we will continue to collaborate with national and international organizations to attract new stakeholders to leverage our capacity.