Our Story

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