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Sep 14, 2015

Usher Brightness

“When I was younger, I never really read about Usher syndrome, I did not want to have anything to do with it.” Until recently, Laura Bingenheimer mostly ignored the fact that she was living with a disease that involves both hearing and vision loss. Rather than thinking about her disease, Laura did everything to live a “normal” life. Despite the extra challenge of trying to keep her hearing aids in place during tumbling routines, Laura devoted herself to competitive gymnastics. The hearing loss that she experienced was just part of her everyday life. She didn’t let it stop her.

In January 2015, however, something changed. It was something in the air—perfume. Laura realized that her interest in perfume was actually tied to her very strong sense of smell, which, in turn, was the result of her diminishing senses of hearing and sight. With this insight, Laura was finally ready to start researching Usher syndrome. She learned that although there are no cures, research is underway. She became determined to make more Usher research possible.

To raise awareness, Laura embarked on an international journey and documented her travels on her blog: Usher Brightness. Her goal is to raise awareness and to inspire people to donate to research. Laura dreams of a future where there are treatments for her tunnel vision and night blindness.

We are so pleased that Laura will be participating in Fighting Blindness Canada’s inaugural National Young Leaders Summit, where she will join young people living with visual impairments to envision how they can build a better future together.

Laura is proud that her fundraising campaign will support Dr. Gilbert Bernier’s research, as he is working on a new strategy to restore lost vision. In many retinal degenerative diseases, such as Usher syndrome, important cells involved in vision, the photoreceptors, are lost. Dr. Bernier has developed a new method to transform stem cells into photoreceptors. His goal is to transplant these photoreceptors into diseased eyes and ultimately regenerate lost cells to restore vision. You can learn more about Dr. Bernier’s research at our upcoming educational conference series: Vision Quest.

Thank you to Laura for your sharing your inspiring journey and for making more research possible!  You can support Laura’s efforts to raise awareness and funds for research by donating to her Fighting Blindness Canada Sight Saver online fundraising page.

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