USH Ambassador for Canada

Pam Aasen

Image description: White woman with chin-length, straight blonde hair sits at a desk facing the camera. Son Ethan sits behind Pam to our right. He has curly, dark brown hair. To our left is her son, Gavin. He has curly dark brown hair and is wearing a red sweatshirt.

Transcript: Pam: Hi. I'm Pam Aasen. I'm the volunteer  USH Ambassador for Canada,  and the parent of two children with Usher syndrome type 1b.  

Ethan: Hi. I'm Ethan. I'm 18 and I'm going to be going to the Rochester Institute of Technology for college.

Gavin: Hi. I’m Gavin. I'm 15 and I'm going to be a junior in high school next year.  

Pam: My family has a varied background. We lived in the Dominican Republic, where Ethan was born,  and then in Canada where Gavin was born, and now we live in New Jersey.  We've been involved in the advocacy world for many years across Canada and the US, and love the community of families we have met at conferences,  and the specific information and supports offered by the Usher Syndrome Coalition and I'm really excited to be the Ambassador for Canada, and to expand that outreach from the Coalition. I look forward to talking to all of you. Thank you!

End of transcript

More about Pam

I currently live in New Jersey so you might wonder ‘why her?’ Well, to quote a famous beer slogan…”I am Canadian!” I was born and grew up in New Brunswick, started my first teaching job in Oshawa, Ontario, lived in the Northwest Territories for a few years and after 7 years living in the Dominican Republic, I spent 10 years in Mississauga before moving to the United States.

My reasons for doing this are my sons, Ethan and Gavin, who were both diagnosed with Usher syndrome type 1b at the Hospital for Sick Children in Toronto in 2009 when they were 7 and 5 years old. At the time there were very few resources or organizations to reach out to and nothing was specific to Usher syndrome. We were very much on our own navigating this new world.

My goal as the Canadian Ambassador is to connect the USH community across Canada to the Usher Syndrome Coalition. I also want to help develop a network of support so families and individuals can tell their story and share information and resources on this shared journey.

We created a Facebook group to give individuals and families in Canada affected by Usher syndrome the opportunity to connect and share available resources across the country.  

I look forward to connecting with you!

Contact Pam at:

Resources for Canada

  • This free, confidential, and simple registry, maintained by the Usher Syndrome Coalition, is the only registry exclusively for individuals of every age with any type of Usher syndrome, worldwide. By registering, you become part of a growing global community. The registry is our most powerful tool to connect the community, learn about the community, and support research.

  • Pam shares her thoughts on this important topic.

  • Pam describes her family's journey to advocate with and for her sons Ethan and Gavin, both of whom had Usher syndrome type 1b.

  • This group gives individuals and families in Canada affected by Usher syndrome the opportunity to connect and share available resources across the country.