Carly Fredericks and Pam Aasen – Ava’s Voice, USA

Facilitating Social Connections with Other Usher Kids, Mentoring for Children with Usher Syndrome, Early Advocacy Skills for Children with Usher Syndrome

45 MINUTES

Carly Fredericks 

Carly Fredericks is a Family Specialist for the New Jersey Consortium on Deaf-Blindness at The College of New Jersey. She is also the Program Coordinator for iCanConnect/NJ, the Deaf-Blind Equipment Distribution Program that provides telecommunications equipment for individuals with combined hearing and vision loss. Carly is the founder of Ava’s Voice, an internationally recognised organisation committed to empowering youth with Usher syndrome by educating families and school communities on the needs of those living with the condition. 

Pamela Aasen 

Pamela Aasen is the proud parent of Ethan & Gavin, who have Usher syndrome 1b. Pam has 25 years experience in special education working with diverse communities in the U.S., Canada and the Dominican Republic. In advocating for her own children she has successfully lead parent engagement initiatives and worked with parents in partnership to become advocates for their children in the process of finding appropriate family-centered care and ensuring an appropriate education. She is currently a Parent-Leader for the NJCDB, a Project Leader and Family Resource Specialist for the SPAN Parent Advocacy Network’s Early Hearing Detection and Intervention Program, a board member of USH Partner Ava’s Voice and one of the facilitators of the monthly Family 2 Family Community call for parents of children with Usher syndrome. 

Facilitating Social Connections with Other Usher Kids, Mentoring for Children with Usher Syndrome & Early Advocacy Skills for Children with Usher Syndrome 

When Carly’s daughter was diagnosed with Usher syndrome, she established Ava’s Voice, a charity dedicated to empowering youth and educating families and school communities on the needs of students with Usher syndrome. In this presentation, Carly will give an overview of the services and supports beneficial to children with Usher syndrome in various educational settings, as well as ideas on encouraging early advocacy skills in both children and families . She will explore ways to build impactful relationships between families and providers, to improve the outcomes for children.