personal fundraiser
Michael Conn
Meet Michael
When we go out to dinner my wife takes my hand to guide me through the dark. An innocent act of love to the casual observer, but it’s also a reminder of how quickly my vision has changed.
I was diagnosed with Usher syndrome type 2A in 2008, the leading cause of combined deafness and blindness. Four years later a vision test showed 80% of my sight remained. Being in my twenties I thought nothing of it and left Australia to do my MBA, get married, have twins and live in four different cities around the world! A decade later, and now more mature, I was shocked to learn my peripheral vision had dropped to just 30% in addition to my deteriorating night blindness. There was so much I didn’t know so now was the time for change.
I have lived my whole life with moderate to severe hearing loss, and now face the reality of progressive vision loss as well brings on new challenges. This led me to make a career pivot away from 15 years in AI and tech marketing into nonprofit work, primarily with the Usher Syndrome Society, where I focus on advancing research and building hope.
Your support will help fund research that could change the course of my life and the lives of others living with Usher syndrome. Thank you for giving generously.
Queen Anne Stands with us
In 2025, the Queen Anne and local community came together for the first time to raise awareness of Usher syndrome and critical funds for research. Thanks to the generosity of our neighbors, friends, and local businesses, we raised more than $17,000!
This November, we’re bringing Queen Anne Stands With Us back for its second year, with a goal of making an even greater impact.
On Thursday, November 19, we’ll be gathering for an evening of cocktails, conversation, and community, all in support of building awareness and advancing research toward treatments and a cure for Usher syndrome.
To help us reach our goal, my wife Lindsay and I have committed to matching donations dollar for dollar, up to $10,000 so you’ll have twice the impact.
Whether you’re joining us for the evening or supporting from afar, thank you for standing with us and helping bring hope to families affected by Usher syndrome.