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.
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.
A Letter From The Past President ‐ Debbie Taillefer
In 1998, after years of typing in the now all too familiar word “Hypophosphatasia (HPP)”, a hit finally came up on the internet! My daughter had been diagnosed in 1994 with this ultra‐rare disorder (I would be diagnosed a few years later), and we were informed by physicians at that time that it was believed she was the only person alive with HPP. We were desperate for answers. Was she going to die? Would she have a normal life? Would she be in a wheelchair or require multiple surgeries? That connection with a fellow HPP family, would ignite a passionate drive to ensure that other families would not have to navigate this difficult road of managing a rare disease with little support and few answers.
My name is Debbie Taillefer, and I am the founder and past president of Soft Bones Canada. In 1999, out of our living rooms at home, Margery Callen and I formed the first Canadian organization called the “Canadian Hypophosphatasia Contact”. This would begin a process of reaching out across the globe, coming in contact with many wonderful patients throughout the world, not the least of which would prove to be a very important relationship for us, founder and president of Soft Bones, Inc., Deb Sittig from New Jersey, USA.
During this time the health of Margery, my faithful support and manager, began to decline.
She had overseen the International Yahoo group and our website while my family had moved to the US and now, she needed me to once again, take the helm. Back at home in Canada, I designed a new website and utilizing the acronym HPP, we became HPP Canada. I now prepared to moderate everything solo for the first time in 14 years. We determined that with the major shift to social media, it was time to retire our Yahoo mailing list. At the close of its usefulness in October of 2013, membership for the group had grown from 2 to 295.
Continuing with the strong connection and relationship we had formed with Soft Bones US, in 2013 Deb Sittig invited me to become Soft Bones Canada and come under the Soft Bones family umbrella.
In 2015, we were very excited to announce that Soft Bones Canada had come into her own and with the support and investment of Soft Bones, Inc., had begun yet another
new chapter. We formally organized as a non‐profit organization with our very first Board of Directors including Jennifer Boin, Director of Education and Events and Lisa McGuffin, Director of Patient Care Services. Joining with us was 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, who is Chair of our Medical‐Scientific Advisory Board.
It was a banner year for HPP around the world but especially for Canada. Along with our maturing to have a full‐fledged patient support group, we had our first approved therapy developed by Alexion Pharmaceuticals known as Asfotase Alfa, discovered by our very own Dr. Philippe Crine, Ph.D., Vice‐President & Chief Scientific Officer, Professor of Biochemistry at the University of Montreal Medical School and a leading scientist in the field of molecular enzymology and protein engineering.
There is still much work to be done and so our commitment remains as passionate and steadfast as it was over 20 years ago: to provide valuable information, education and support to patients, their families and caregivers living with HPP. We hope you will join with us in promoting research, proper diagnosis, and access to therapies through raising awareness in the coming years
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™
PO Box 33085 Uplands PO