Meet the team behind the scenes.
I was diagnosed with HPP at three years of age, but at that time no one seemed to know what to do with me. Luckily, aside from my dental issues, my HPP remained quiet for most of my childhood, but ramped up in my mid-twenties and continues to challenge me physically and emotionally.
Like so many other patients with HPP, I felt very isolated and frustrated by the lack of reliable information available to me. In addition, I had no one to support me, or offer advice about how to best care for myself. It felt like I was trapped inside this shell that was wearing down far faster than my spirit.
Luckily, I found Debbie Taillefer and Lisa McGuffin and they offered me support and the opportunity to assist in the creation of this national non-profit organization.
As Soft Bones Canada expands and grows, I hope to help save other patients and caregivers from feeling alone in their search for information and hope to give a voice to the concerns and needs of patients and their care givers in Canada.
Aside from my work with Soft Bones Canada™, I am a full time high school teacher, currently working as a guidance counsellor. I am the mother of two very active young children and the wife of an equally active and very supportive husband. I love to hike and read, but not at the same time – that’s dangerous.
I look forward to working with all of you.
My name is Linda Toews. I am a mother of 6 wonderful children and 3 grandchildren. My youngest son, Willem (15), was diagnosed with Juvenile HPP in-vitro. Our family has known that we were carriers of the HPP gene for the last 22 years. When Willem was born, there were no options to increase his quality of life. Research has changed in the last 10 years and opened opportunities for us to be part of it. Willem is a 15 year old young man that loves life and sees endless opportunities in front of him. As our family faces the challenges of HPP, I find that I would like to help and share the successes and struggles that we had.
Awareness and education of this disease is a priority for me. The medical community has increased in knowledge of HPP, but more work needs to be done. As I have accepted the Role as Director with Soft Bones Canada™, I look forward to working with patients and families affected by HPP. I look forward to connecting with you and sharing resources, awareness and encouragement to your families.
Chair, Board of Directors Soft Bones Canada
My name is Debbie Taillefer, and I am a mother of two amazing children and a grandmother. I was diagnosed with HPP at 33, though I had symptoms from early childhood with genu valgum, a lot of dental issues, restless legs, aching and muscle weakness. Leaving my career as an archivist at the RCPSC to care for my family, I homeschooled as there were few resources to back our public school in assisting families with a rare disease, much to their grief. Determined that families have a shorter journey to diagnosis and improved access to resources and support, I set-out to raise awareness – educating, empowering, connecting wherever the need arose.
This consists of developing and implementing engagement initiatives and activities, regularly deepening our knowledge of the Canadian health care system and related medical and health care environments, as well as health and public policy analysis. My desire is that SBC’s activities are aligned with the views that are identified by patients and caregivers and that they are proactive and impactful on issues relevant to them. It is my privilege to collaborate with all those interested in being a voice for patients and caregivers at all ages and stages.