November MPS Fireside Chat

Support for Families. Research for a Cure.

Mucopolysaccharidoses (MPS) and mucolipidosis (ML) are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes. The missing or insufficient enzyme prevents cells from recycling waste, resulting in the storage of materials in cells throughout the body. As the disease progresses, there is widespread damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system, leading to a shortened lifespan.

When families learn that their child has been diagnosed with MPS or a related lysosomal starage 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. 

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.  We try to help families to focus on their children and their families and make sure they know that they are not alone in their journey.

Our programs and services include:

• Educational Resources– Available in both english and french
• Financial Assistance Program– Providing financial support to help families manage costs associated with care and treatments of MPS and related diseases
• Advocacy – Supporting families with 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 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: 1-800-667-1846 or by email: info@mpssociety.ca