Our Story

Soft Bones Canada Inc. was formed in 2013 to provide information and a community to educate, empower and connect patients living with HPP, their families and caregivers.

 

The organization also promotes research of this rare bone disease through awareness and fundraising efforts.

 

Hypophosphatasia ‐ A Canadian Story

 

The first report of Hypophosphatasia (HPP) in the English language medical literature has been attributed to Dr. Bruce Chown of the University of Manitoba, Winnipeg. In 1936, Chown described two sisters of Welsh descent with what he called “renal rickets” (Chown 1936; Fraser 1957).

 

A Canadian physician, John Campbell Rathbun, first named the disorder Hypophosphatasiain 1948, after he treated a baby boy with paradoxically low levels of alkaline phosphatase. The boy was first treated on December 19, 1946. For a long time it was known as “Rathbun’s Syndrome.”

 

In 1995, Margery Callen of Toronto, Canada, diagnosed in 1992 after 5 years of fractures and surgeries, connects to the internet seeking support. She discovers and makes first contact between patients Del Sieber and Carol Clapshaw in the US and they start communicating.

 

In 1998, Margery and Debbie Taillefer connect. In 1999, they begin to discuss the need to provide support to Canadians and their families. They form the first Canadian organization called the “Canadian Hypophosphatasia Contact” They develop the first Canadian website and brochure with a brief synopsis of HPP and support contacts.

 

 

 CHC graphic 1CHC graphic 2

 

The three figures in the original logo represent people working together and supporting each other; standing on the shoulders of those who have gone before and encouraging those coming after to do the same. The porous heart represents a compassion for those who have poor bone density, striking at the very “heart” or nature of bone disease.

 

 For Marge and for Deklyn

 

Dec. 23, 1999, Debbie creates the first international support group via Yahoo Groups called “Worldwide Hypophosphatasia Support Mailing List.”

 

2006 Prof. Philippe Crine, of Enobia in Montreal, PQ, developed the first therapy called “Asfotase Alfa” ‐ a bone targeted enzyme replacement therapy for Hypophosphatasia.

 

2008 Dr. Cheryl Rockman‐Greenberg, MD, CM, FRCPC, FCCMG Professor, Department of Pediatrics and Child Health and Programme in Genetics and Metabolism College of Medicine, Faculty of Health Sciences started the first clinical trials. Enobia flew a little girl from Belfast, Northern Ireland, to Winnipeg for treatment.

 

For more information, please contact

Soft Bones Canada

P.O. Box 882

Winkler, MB

R6W 4A9
email contactus@softbonescanada.ca
www.softbonescanada.ca