The USH Connections Conference: Our Family's Experience
June 13, 2019
by Lanya McKittrick
I have the pleasure of blogging about this year's Usher syndrome conference, the USH Connections Conference. As I think about this year's conference, it makes me reflect on what these conferences mean to me and my family. To do this I am going to share my history with these conferences. For those who do not know me, I am a mom of four boys, two who have Usher syndrome (Conner will be 20 next month, and Dalton is 11). In 2004, when my husband, Todd, and I learned about Conner's diagnosis, we felt so alone. We knew no one else who had Usher syndrome. Soon after that, we met Dr. Bill Kimberling and began learning all we could.
In 2004, we started the Hear See Hope Foundation and have since raised almost 2 million dollars for Usher syndrome research. A few years after we began Hear See Hope, Bill helped connect us with the Dunning family. You see, at that time, the Usher Syndrome Coalition did not exist, and it was difficult to connect with other people affected by Usher syndrome. Through our relationship with the Dunnings, the idea for the Coalition came about. In 2010, Hear See Hope Foundation hosted the first Usher Syndrome Conference in Seattle, as part of our collective vision to connect people. It was small, but it filled a need that wasn't there before. On that day, I met so many families and adults with Usher syndrome who quickly became friends who I still talk to today. This day gave Todd and me great hope and a realization that our family was not alone. Our kids were only 10 and 11 at the time, but it was the first time Conner had met anyone his age with Usher syndrome (Bella Dunning). For Cole, it was the first time he had met another sibling “who just understood” (Jack Dunning).
Fast forward nine years, I feel fortunate to still be involved in the Coalition and the Usher conferences. These events have evolved and improved over the years. For me, this conference is special. I get to network with adults who have Usher syndrome. I get to see the smiles on my kids' faces because they are with people who are "like them." The conference introduces me to information about the most recent research advances, which in turn gives me hope. It brings researchers together, with the broader Usher syndrome community in mind. We have such a strong USH community, and I look forward to this day so I can reconnect with people I haven't seen in a year and I can meet new people in the community. The USH Community is my family in more ways than I can explain. When I am down, they listen. When I am proud of something, they listen. I am so thankful for them. I think back to that day in 2004, when I felt so alone, and I'm happy that the opportunity to connect with others who understand what I am going through now exists.
This year I received my Ph.D. in Special Education with a focus on deafblind research. I saw that families like mine were struggling with their child's needs not being met at school, so I sought to learn more. I am pleased to be sharing some of my dissertation research with you at the upcoming conference. Along with one of my good friends and fellow USH moms, Carly Fredericks from Ava’s Voice, I will be presenting about working with educational teams.
If you are deciding whether to come, I hope I’ve shared some of the ways that my entire family benefits from the conferences. I get asked all the time if it's worth bringing children and the answer is yes. Our kids have gotten a lot from being around their peers, so I do recommend this event to families.
This year, my oldest son, Conner, can't attend because he will be studying abroad in Kosovo. However, I'll be there with the rest of our family. I hope you can join us.