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.

My name is Jennifer Paulson and I am excited to be joining the Board of Directors of Soft Bones Canada®. I am a parent and caregiver of two girls who have the recessive form of hypophosphatasia. The support we have received from SBC since the organization formed in 2013 has been incredible and it is a privilege to join the team to support HPP families across Canada. We live in Alberta and have had the pleasure of getting to know other Alberta HPP patients over the years as well as learn about care providers in this province. My older daughter has been receiving Strensiq for her condition for several years and was a trial participant before the drug was approved. My younger daughter does not receive the medication and we work to manage symptoms with other available solutions.

As a Director of SBC I offer the perspective of a caregiver with these diverse experiences. I also have extensive experience with research and communication, having completed a PhD in 2012, and also speak French fluently. I look forward to using my skills and understandings to support the Board’s commitment to educate, empower, and connect HPP patients and caregivers.

My name is Eric Neufeld and my family and I live in Southern Alberta where I work as a teacher in a private school. I had little knowledge of HPP until 2002, when I was introduced to a young man affected by the disease. This introduction changed my view of rare diseases forever and has given me a desire to inform others about this and other rare conditions that people face daily.

I have recently accepted the position as a Director for Soft Bones Canada®,  and my hope for this organization is that more families will be helped through the work that is being done in the field of rare diseases. I look forward to assisting you in any way that I can.