Personal Fundraiser

Meet Shawn Hewson

Shawn Hewson is living with Usher syndrome Type 3A. Over the last few years, he has shared many of his experiences with the world through public speaking, writing, and documentation of important moments in his life. By sharing these experiences and articulating his journey of navigating life with USH3A, Shawn continues to raise public awareness of Usher syndrome. His willingness to open up about life with USH has also connected him with many others in the USH community who share similar experiences. Shawn has been instrumental in raising funds for the very first USH 3A Zebrafish that is currently being used in the lab.

Below you can find some of the stories that Shawn has shared with us over the years.

Facing the Fears of Fatherhood

Competing with USH

Comet’s Landing: Shawn’s first guide dog

In 2021, Shawn got his first guide dog, Comet. The story below was written by Shawn sharing his experience of learning to work with Comet and the beautiful bond they develop.

Additional Writing and Presentations by Shawn Hewson

An image of two men. One of the men is Shawn Hewson and the other man is helping Shawn feel the writing on a large bell that appears to be a monument.

When Getting By Isn’t Good Enough Anymore

Learn more about Shawn’s journey with Usher syndrome, from his diagnosis, to the challenges he encountered growing up in a small town and playing sports with this condition, to how he manages his diagnosis today.

A photo of two hockey players in front of a hockey net playing on an indoor hockey rink.

“Mission Tampa” A Success for Blind Hockey

Read Shawn’s first hand account of his experience joining the inaugural Minnesota Wild Blind Hockey program in 2019 and participating in the Toyota-USA Hockey Disabled Hockey Festival in the Tampa Bay, FL. 

An image showing a slide of a presentation that says "Genetic Disorder: Usher Syndrome" with a photo of Shawn and his guide dog, Comet.

Presentation for the University of Iowa

In Spring 2023, Shawn gave a presentation to the University of Iowa to share information about his diagnosis with Usher syndrome and trying to navigate life with this diagnosis. Click the button below to download his presentation.

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