About

About
About
Why we exists

About us

In 1984, Sheila Lee’s daughter Brandy was diagnosed with MPS I, with doctors saying there was no treatment and she wouldn’t live past ten. Sheila and her husband, Loren, then realized their eldest daughter, Rachelle, who died in 1979, had also had undiagnosed MPS. With no information or support available in Canada, Sheila felt devastated yet determined. From her home in northern Manitoba, she began searching for other families, ultimately founding the Canadian MPS Society to offer hope, support, and awareness.
The Society’s goals were clear from the start: support families, raise awareness, and fund research. Sheila worked tirelessly to find other Canadian families affected by MPS, driven by hope for Brandy and others. Progress slowly grew, leading to the first National MPS Conference in Gimli, Manitoba in 1985. This successful event united Canadian families for the first time, allowing them to connect, share experiences, and learn from leading experts in the field.

Mission & Vision

Services

Our Mission

All Canadians affected by MPS and related diseases are supported and empowered to live their best life.

Services

Vision

The Canadian MPS Society serves all Canadians affected by MPS and related diseases through support, education, advocacy and by advancing research.

Services

Values

Community & compassionate support

Health & wellness

Justice & equality

Education & awareness

Research & innovation

View the 2024 - 2027 Strategic Plan
Why we Exits

What the Society has Achieved

30 years after its humble beginnings, the Society has provided over $100,000 in family assistance grants, invested more than $1,000,000 in research, and supported hundreds of families affected by MPS and related diseases. In 2008, it welcomed over 1,000 delegates from 37 countries to the 10th International Syposium on MPS & Related Diseases in Vancouver, BC. Explore our annual reports to learn more.

Is there a cure for MPS?

30 years after its humble beginnings, the Society has provided over $100,000 in family assistance grants, invested more than $1,000,000 in research, and supported hundreds of families affected by MPS and related diseases. In 2008, it welcomed over 1,000 delegates from 37 countries to the 10th International Symposium on MPS & Related Diseases in Vancouver, BC. Explore our annual reports to learn more.



MPS Society Team

Mélissa Bilodeau

Chair

Montreal, Quebec MPS, IVA - Adult

Mélissa Bilodeau

Chair

Montreal, Quebec MPS, IVA - Adult

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Remembering Our Children

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Loïc Bydal

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Our Stories

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Loic passed away in February 2024. He was a courageous and determined being and touched the lives of many. Here is is letter to you all recounting his journey in his own words. The original French version is posted below the English translation. “Good evening to all, this evening, I would like to inspire you all to have faith in yourself and to persevere in your life.

Loïc Bydal (MPS I)