Why We Exist
In 1984, Sheila Lee’s daughter, Brandy, was diagnosed with MPS I. Sheila and her husband, Loren, were told there was no treatment or cure and that Brandy would die before she turned ten. It was then that they realized their eldest daughter, Rachelle, had died in 1979 from MPS having never been diagnosed. Shocked, devastated, and desperate for information and support, Sheila reached out but found that no literature existed and there was no organization in Canada dedicated to MPS or lysosomal storage diseases. Her desperation to speak to another parent of an affected child fuelled her search to find other affected families and, from her home in northern Manitoba, the Canadian MPS Society was born.
The goals of the Society were established early on: provide family support, create awareness, and fund research. Sheila worked diligently to find other Canadian families affected by MPS and related diseases. Children were dying; it was the hope of a treatment for Brandy and the other children that kept Sheila pushing on. Little by little, progress was made and the first National MPS Conference was held in Gimli, Manitoba in 1985. The conference was a wonderful success, providing the first ever opportunity for Canadian families to come together, meet other children affected by MPS and their families, and learn from experts in the field.
30 years after the Society’s humble beginnings, it has funded over $100,000 in family assistance grants, over $1,000,000 in research, and has assisted hundreds of families on their journeys with MPS and related diseases. In 2008, the Society hosted over 1,000 delegates from 37 countries for the 10th International Symposium on MPS & Related Diseases in Vancouver, BC.
Although there remains no cure for MPS, there are now four approved enzyme replacement therapies for MPS I, II, IVA and VI. The Society continues to support and connect those affected by MPS and related lysosomal diseases, while working to ensure that all patients have equitable access to the care and treatment they deserve.