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I have decided to step down from the Usher Syndrome Coalition Board of Directors. This was not an easy choice for me. I am still very committed to the mission, but changes in my life and in my job have made it very difficult for me to contribute at the level I would like. I feel I am in the way more than I am helping and the work of the Coalition is too important to delay.

I am pleased to announce that our Board of Directors has voted unanimously to elect Lane McKittrick as the new chair of the Usher Syndrome Coalition. Lane has a long history of working with the community and, more specifically, with the Coalition. She has extensive experience running her own Usher syndrome focused nonprofit. Hear See Hope has been one of the greatest supporters of the Coalition, and Lane has been consistently involved in all we have done from day one. She and her husband Todd both recognized the importance of organizing the community, and they were literally there at the table when the idea of the Coalition was formed. Since then, she has served on our board, helped to plan conferences, and tirelessly advocated for Usher syndrome research. She “gets” us. With Lane’s extensive background in nonprofit management, organizational leadership, and her personal passion for the cause, we are in great hands.

Please know that I will still be involved with the organization. You’re not rid of me yet!

You will remain in my heart and my thoughts always. Be safe during these difficult times. 

-Mark Dunning


To my USH Coalition family, 

I feel so blessed to have been chosen to serve in the important role as Chair of the Usher Syndrome Coalition Board and look forward to the coming years. As you all know, we have an amazing board and staff at the Coalition, which is why I feel so lucky. It’s true that we aren’t going to be able to meet in person this year, but that is not stopping us from building community. Krista Vasi, the rest of the Coalition staff – Julia Dunning and Nancy O'Donnell - along with our USH Partners and many volunteers are working hard to find ways to connect virtually. These efforts began with our Hearts on Hand campaign we launched in March.

As Mark stated, I’ve been involved with the Coalition since the very beginning. You can read more about my background in my guest blog. My husband, Todd, and I met the Dunning family back in 2004 when our son, Conner, was diagnosed with USH 1b, right after we had started the Hear See Hope Foundation. Our families became instant friends. We soon began planning the first USH family conference in Seattle, thinking of ways to bring our community together, and how to find a cure. The event was small but it was an exciting beginning.

The USH community has now grown: We're in touch with thousands of individuals, families, researchers, and professionals in the Usher syndrome community; our 2019 USH Connections conference was attended by nearly 400 people, we have nearly 1600 individuals from 66 countries in the USH Trust registry; and we connect with new members of our global USH family every week. 

The impact of the COVID-19 pandemic has instilled a renewed sense of urgency to find and support everyone in the Usher community. The Usher Syndrome Coalition is working hard to build a strong, worldwide community through outreach, collaboration, and education. I am excited about the future of the Coalition and honored to have the opportunity to lead us through the coming years.

Feel free to reach out to me at any time at

You are all in my thoughts and prayers during these unprecedented times.

Be healthy,

Lanya McKittrick

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