parents and professionals, those that offered conferences and more opportunities to learn about best practices and new innovations. I certainly appreciated the professionals we had in our lives, but I was looking for as much information as I could, to further develop my children's skills. After all, much of our time was spent outside the professionals' offices, so we needed as much support as possible, to put what we learned into practice when we were on our own. I enjoyed attending panels and being able to hear what other parents and/or adults living with Usher syndrome had to say.

And then, I was asked to be on panels to share my journey. I wasn’t really looking to do that. I was nervous, but it seemed a natural progression from wanting to find the support and resources needed to help my children, to then being given the opportunity to share what I had learned with other parents and caregivers. From panels, I went on to speak to groups that included professionals, teachers, and students. The next progression for me was involvement in advocacy and awareness groups. I volunteered to become an Awareness Advocate for the company that made my children’s cochlear implants, to help families who were making a decision about cochlear implants for their child. From that, I was offered the opportunity to be employed part-time as the Cochlear Awareness Coordinator for Canada. I was asked to speak at a couple of fundraisers, which led to creating a charity golf tournament to raise money for organizations that were important to our family.

EMPOWERING OTHERS: The author after being named winner of the 2020 EHDI Family Leadership Award; "The leadership of parents, representing the voice of families in meaningful roles within programs and communities, is crucial to positive outcomes and accountability."

As these opportunities were coming my way through the groups I was involved with, I still did not recognize that my involvement was putting me on the path of becoming a Parent Leader. The term Parent Leader was not heard much, even within the parent groups I was a part of. I was still working as a Special Education teacher, and considered myself an educator, in terms of employment, and outside of work, as a parent advocating for my children. Then in 2010, I was approached to be a Board Member for a very well-known and large Children's Treatment Centre in Ontario, Canada, where we were living. My children had worked with professionals across several regional locations for this center. I was very intimidated by this opportunity

and wondered what I could possibly have to offer them. This was my first experience where the term Parent Leader was used, and it was suggested that my voice as a parent would be valuable to the Board of Directors, who were overseeing a center that treated children. The importance of the parent voice seems so obvious now.

This role added to my confidence, and led me to seek out other roles and choose to serve on different groups, when offered the opportunity. When I moved to New Jersey and left teaching full-time to focus on my children, these previous roles compelled me to seek out organizations in the United States. I joined the Board of Directors for Ava’s Voice, a non-profit Usher syndrome organization and became a Volunteer Ambassador for the Usher Syndrome Coalition. In 2017 I applied for a job as the Early Hearing Detection and Intervention (EHDI) Family Support and Engagement Project Director for the SPAN Parent Advocacy Network; which I have been doing now for five years. SPAN also provides training to be a Resource Parent and Volunteer Advocate. All of these experiences challenged me to add my voice where it is needed, even if it felt out of my comfort zone at first. As I look back, I realize the key for me has been finding the groups that most reflected my background, and where I felt I could contribute.

Most groups focus on advocacy/empowerment, fundraising, research, policy change, awareness/education, or some combination of these areas. I have dipped my toes a little in fundraising, research and policy change, but have leaned more toward organizations that are engaged in advocacy/empowerment and awareness/education. SPAN is an amazing organization that I have been privileged to be part of, because it empowers parents to become leaders and educates families to help improve outcomes for children. Through my work for SPAN, I was honored to receive the 2020 National EHDI Family Leadership Award, a recognition that was both surprising and validating. With Ava’s Voice cofounder, Carly Bullis, I have been a part of many initiatives to connect families and empower youth. I am most proud of helping Carly realize her dream in starting the first sleep away summer camp (USHthis) for youth with Usher syndrome, in 2019. And then, in collaboration with Chloe Joyner, who founded UsherKids, UK, the camp was held in the UK in 2022. It is going to be offered in both countries in 2023. This is what it is all about… creating the