USH Ambassadors for Canada - Pam Aasen, Awais Nisar, and Natalie Shearer

Meet Pam

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 video

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 one of the Canadian Ambassadors 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 stories 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!

You may contact me at ambassador.can@usher-syndrome.org

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!

Meet Awais

 Hey y’all! I'm Awais Nisar, located in Barrie, Ontario. I'm fluent in English, American Sign Language (ASL), and basic French too. I have been dealing with the diagnosis of Usher syndrome Type 1C since I was 11, but I'm not letting it slow me down. I started getting the hang of using the white cane last Christmas, making navigation through the crowds a breeze during nighttime.

I received my Bachelor of Science in Computer Science degree from Lakehead University and now I'm enjoying it at GoSign.AI as an App Developer for my internship. Tech is my passion, and I'm all about bringing it to the Deaf community. AI is trending lately, but it has been leaving signers out. While it can transcribe speech into text precisely, allowing for the summarization of notes from Zoom calls, sign-to-text is still not available for this feature. That's where GoSign.AI steps up. It's an app where you can game it up, earn rewards, and help us learn your signs. We're ensuring everyone in the sign language community can keep up with the fast-paced world.

As an USH ambassador for Canada, I'm focused on bringing the Usher syndrome team together. I am involved with the other ambassadors in hosting monthly Zoom calls in ASL, providing a first-of-its-kind forum for the signing Usher community. I am thrilled to connect with y’all from across Canada and strengthen our community. 

Drop me a message at ambassador.can3@usher-syndrome.org.

Cheers,

Awais (pronounced us-VAZ)

Meet Natalie

Hey everyone! I'm Natalie Shearer,

I was diagnosed with USH2A when I was 16, so I've actually passed the threshold of more years with the diagnosis than without it - a recent realization!

I'm joining from just east of Toronto, Canada, where I live with my partner and two kids, aged 5 and 8.

A bit about my career path, so far - prompted by my experiences with Usher syndrome and background in educational technology - I spent four years operating an accessibility consulting firm with a friend of mine who also has retinitis pigmentosa. We called it Two Canes Consulting! In a very serendipitous way, my consulting work led me to my current role as Head of Accessibility and Operations for a mission-driven technology startup called Lotus. I'm a Certified Professional in Accessibility Core Competencies (CPACC) through the International Association of Accessibility Professionals (IAAP) and lead the Lotus team in their efforts to stay true to our disability-led mission. There are so many incredible people working in the accessibility space and one of my favourite parts of the job is getting to connect with them. I have a feeling the USH community will be similarly wonderful (it already has been so far!).

Outside of work, you can find me spending time with family and friends, cooking, traveling, and cheering my kids on at their various activities. 

I'm grateful for the chain of connections that brought me here and excited to get to know each of you!

You may contact me at ambassador.can2@usher-syndrome.org

Resources for Canada

  • The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • Individuals with Usher syndrome who are passionate about research have a new data collection platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, date of birth, address, etc.) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

  • Find a genetic counselor or clinic

  • Deaf, hard of hearing or speech-impaired Canadians use Canada VRS to access and make telephone calls using Internet and cell-phone based technologies. VRS callers are connected with a sign language interpreter who provides real-time interpretation for telephone calls. This service is free.

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

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

  • Pam shares her thoughts on this important topic.

  • Pam is the mom of 2 sons with Usher syndrome type 1B. In this article, she describes the challenges of balance/vestibular issues associated with Usher syndrome type 1, and strategies to mitigate it.