Grounded in Science
A balance of research news and well-being for the Usher syndrome community.
Can you believe it’s already March? We hope you saw our last email announcing some exciting events in 2023 and the date for next year's USH Connections Conference (July 19-20, 2024). Next month, April 26-27, 2023, our USH Champions are returning to Capitol Hill to advocate for Usher syndrome research. If you’re interested in joining us, fill out this form.
We also launched the Usher Syndrome Coalition Discord Community Server! Have you joined yet? It’s a safe place for the community to connect with each other. Join here: https://discord.gg/czwHGaDu7W
In Case You Missed It: Science News Feature
OHSU confirms first nonhuman primate model of Usher syndrome
Martha Neuringer, Ph.D., leads the research team at OHSU, Oregon Health & Science University, that confirmed the first-ever nonhuman primate model of Usher syndrome.
Dr. Neuringer's lab created a monkey with the MYO7A mutation that causes Usher Type 1B. For the first time, an animal model demonstrates all three phenotypes of USH1B: deafness, impaired balance and retinal degeneration.
This is significant because primates are the closest genetic cousins to humans, and having this animal model allows scientists to better understand Usher syndrome and test potential treatments.
For more science news, check out our Science News page, organized by treatment approach and type of Usher syndrome.
On Well-Being: Grounded in Our Senses
Usher syndrome affects vision, hearing and balance. It can result in the feeling that the other senses are heightened, causing sensory overload. All of our senses have the ability to ground us in different ways, giving us the power to manage our emotional state at anytime, in any space...
USH Life Hack of the Month
(Send your USH life hacks to info@usher-syndrome.org.)
Usher syndrome affects hearing to various degrees, making it challenging to find an effective alarm clock to wake up even the deepest of sleepers. Because we can’t all wake up naturally whenever we feel like it, try looking for an alarm clock that wakes you up using your other senses! Some examples are vibrating alarm clocks or alarm clocks that emit light.
