2023 PNW Ushers Syndrome Social

Wrap-up: 2023 PNW Ushers Syndrome Social

Wrap up: 2023 PNW Ushers Syndrome Social

As the cooler temperatures take hold and we move into fall, we’re reflecting on a summer of events that provided many opportunities for the disability community to gather, connect and access resources. One such event was the Pacific Northwest Usher Syndrome Social and Education event hosted by our own Dr Lanya McKittrick.

Dr McKittrick, Director of the Idaho Project for Children and Youth with Deaf-Blindness (ICYDB), also serves as the Chair of the Board for the Usher Syndrome Coalition. Each year the Coalition holds an annual conference. This year broke with tradition, instead inviting regions to hold local social events. Dr McKittrick jumped at the chance to host. 

She welcomed individuals with Usher Syndrome (the leading cause of genetic deafblindness), their families and support professionals to her family ranch in Washington state for two days of learning and connection. As a mother of two boys with Usher Syndrome, she is keenly aware of the value these opportunities bring to families and service providers.

On the left, Rebecca Alexander presents a workshop to an audience about mental health. On the right, Lane McKittrick stands before an audience, presenting a workshop about IEPs.

“I've struggled over the years with the trauma of the kids’ diagnosis. Being on our ranch around the animals, enjoying the outdoors, has been very therapeutic for me. When I saw the impact on myself and our family this place has had, I knew my life goal was to share this with others. This is how this dream was born.

“For two years, I've wanted to bring individuals who are deafblind and their families here in hopes that this place could give someone else as much joy as it has given us. This August, that dream came true,” she said.

65 people from across the Pacific Northwest attended the event, with a simple purpose: connect and learn. The first day focused on educational sessions, with an IEP workshop by Dr McKittrick and a mental health workshop by Rebecca Alexander. The second day allowed guests to visit the family ranch, connect with others and see the animals. There was also an art workshop led by award winning artist Rose Kamma Morrison. 

It was all about providing a network so individuals with Usher Syndrome and their families know they’re not alone – they have a whole community of support.

A young woman kneels down next to a Scottish Highlander calf. She is smiling for the camera and holding the animal's reigns.

“These three days were life changing for me,” said Dr McKittrick. “Not only did I have all four of our boys here, but we were surrounded by our broader Usher Syndrome family. I felt completely at peace. Seeing the smiles on people's faces this weekend made me so happy.”

Dr McKittrick is hoping to make the Social an annual event, with many attendees agreeing that it should be a summer staple. She’s also hoping to expand the event to all people who are deafblind.

In the meantime, the ICYDB Blindness provides many free resources and information for children with deafblindness, their families and education professionals who support them. This includes support, observations and training. For more information, visit our website or contact us.