INVESTING IN RESEARCH, ADVOCACY, PUBLIC AWARENESS AND EDUCATION
Lupus Canada would like to thank our donors for their ongoing support and we welcome our new prospective donors to our organization. As an organization whose mission is to improve the lives of all Canadians living with lupus, Lupus Canada is uniquely placed to invest its resources in areas where it can make the greatest difference; investing in research, advocating for lupus patients and their families, creating the much-needed awareness for this debilitating disease, and supporting students living with lupus to achieve their academic goals.
Lupus Canada strives to support research that has the greatest potential to improve the health or lives or persons living with lupus and their families. These high impact studies range in focus from basic life science to applied clinical research with the intent to uncover the causes of lupus, understand its progression, and accelerate the search for meaningful treatment. In funding collaborative research, Lupus Canada elevates the potential and number of opportunities for lupus researchers by delivering sustainable funding, and importantly, supporting the work of the best researchers in Canada.
Lupus Canada’s advocacy effort seeks to educate and inform people impacted by lupus and those who care for them about their legal rights and entitlement. It also strives to work with politicians and government to enhance policies and legislation affecting people living with lupus. Networking opportunities with federal and provincial politicians is helping bring lupus and related issues to the forefront, with importance on equitable access to care and treatment for ALL Canadians living with lupus.
Due to the multi-faceted nature, lupus is not an easily recognizable disease and does not lend itself to be widely known by the public. It is therefore necessary to provide knowledge and create awareness among Canadians. Lupus Canada’s public awareness campaigns through the efforts of our celebrity ambassadors – Patrick McKenna, Colin Mochrie, Debra McGrath and DeMar DeRozan – continue to attract media attention. We have seen a significant growth in our awareness over the past few years and we look forward to continued growth to help create awareness for this debilitating disease.
Research, advocacy and public awareness programs indirectly impact lupus patients through improvements in available treatment options, delivery of health care services and public understanding. To date, much of the education work has been done through our website and social media, where reliable information on support and availability of resources is provided. Lupus Canada also provides direct support through scholarships to post-secondary students impacted by lupus to help students living with lupus to succeed in attaining a post-secondary education. To date Lupus Canada has provided 57 Scholarships to well deserving students pursuing a post-secondary education.
In 2022 Lupus Canada’s specific Research initiatives were:
- To provide infrastructure funding to support the CaNIOS national registry. This registry allows for systematic description of the real-world patient journey in terms of clinical features, disease activity and progression, treatment patterns, clinical outcomes, patient reported health outcomes, and healthcare resource utilization in people with lupus from across Canada. Which allows researchers to collaborate across Canada and across the world sharing and comparing anonymized data.
- Fund a Catalyst Grant titled Megakaryocyte: a new player in systemic lupus erythematosus.
- Collaborate with researchers to help develop lay language documents reporting the results of international surveys related to the sources of and trust in health information with a particular emphasis on the Canadian data.
In 2022 Lupus Canada’s specific Advocacy initiatives were:
- To advocate for people living with lupus and their families to support more government funded lupus medications.
- Work to help ensure all Canadians living with lupus have equitable access to care.
- Connect with elected officials and policy makers to help bring a voice to lupus.
In 2022 Lupus Canada’s specific Awareness initiatives were:
- Offer monthly informative and interactive series of webinars for all Canadians impacted by lupus.
- Raise lupus awareness and significantly increase our online media presence.
In 2022 Lupus Canada’s specific Educational initiative was:
- 6 Scholarships to well deserving students pursuing a post-secondary education. This support reduces the stress and financial burden on students and their families, who are already coping with the aftermath of the disease and its lifelong costs.