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-Brand 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.

Bio Coming Soon