What We Do
Support for Families. Research for a Cure.
When families learn that their child has been diagnosed with MPS, a rare, progressive and incurable disease that may potentially take their child’s life, it places on them a heavy emotional, physical and financial burden that few can relate to or understand. Most newly diagnosed families have never even heard of the disease and struggle to find adequate information or resources to guide them through the process of seeking treatment. Despite their astounding strength, resilience and optimism, many families struggle to readjust their lives to the overwhelming new reality presented by this disease.
The Canadian MPS Society helps ease the burden by directing families to important sources of information, research and medical help, and by connecting them with other families experiencing similar situations to expand their network of support. We also provide financial support to families through our Family Assistance Program—to date, we have funded over $100,000 in grants to offset the many costs incurred with a diagnosis, such as travel to treatment facilities, medical aides and wheelchair accessible home remodelling. We make sure families know that we’re there for them through grants that help them focus on their children rather than on financial hardships.
It’s hope that keeps families pushing on during those difficult days. Hope of treatment, hope of a better day, hope that their child will live a bright and fulfilling future.
Our programs and services include:
- Educational Resources – Available in both english and french
- Financial Assistance Program – Providing limited financial support to help families manage the extraneous costs associated with MPS and related diseases
- Advocacy – Our staff are available to support families in accessing appropriate care and treatment, connecting to other members for mutual support, and during times of loss and bereavement
- National Conference – Our biennial national conference brings together the MPS community to learn about advances in care and treatment while developing life-long friendships
- The Connection – Our biannual newsletter is a valuable source of news from Canada’s MPS community, including stories from our members and partners, research and treatment updates, and information about upcoming events
- The e-Connection – Our monthly digital newsletter is a current source of news from Canada’s MPS community, including stories from our members and partners, research and treatment updates, and information about upcoming events.
The Canadian MPS Society exists to support all those affected by MPS – individuals, caregivers, families, friends, support workers, and health care providers. Our staff are available by calling our toll-free number at 1-800-667-1846.
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