Usher 2020

Looking forward to joining our community on Friday and Saturday, July 19 and 20, in Rochester to learn more about research and support for Usher syndrome. Hope to see you there!

Thanks to all of the USH Champions who met with their representatives in person in D.C. last week, and virtually, to support increased funding toward treatments for those with Usher syndrome.

Thanks to all who give from their heart. Happy Valentine’s Day!

Bring it on, 2024. We are ready for you. Let’s make this year the one where we say, “Yes, we can!” There is power in determination. Let’s go!!! UsherCommunityStrong

Hoping you find the comfort, joy, peace and light of the season.

Today is a day to be thankful for what we have. We are so thankful for our Usher community: Friends, family, those with Usher syndrome, caregivers, researchers, and our supporters.

This , don’t just give… .
If you give $100 or more, you will receive a T-shirt with the logo on it (while supplies last)! Help us fund research to find a treatment for those living with Usher syndrome.

Swipe to see some of our accomplishments this year and ways you can help us going forward.

Casting is currently taking place for a Deaf-led feature film (written/directed by Jevon Whetter and produced by his brother, Delbert Whetter) FLASH BEFORE THE BANG, based on a true story of a history-making high school track team. Audition link: https://bit.ly/AirFBTB or email [email protected] for more information.

Usher Syndrome Community: Don’t miss this opportunity to be a part of this inspirational film.

Flash Before the Bang Casting Call 2023 NOW CASTING: MALES 18+ D/deaf/Hard of Hearing and Deaf-Blind for a feature filmPlease email [email protected] for more information and spread the word...

Calling all 18+ males with Usher syndrome: There is currently a nationwide search for Deaf, HOH, and DeafBlind performers of all skill levels with high-intermediate to high ASL fluency for a Deaf-led movie about an inspirational deaf track team. Audition information here: https://bit.ly/AirFBTB or email [email protected]

Another successful trip to The Hill with these Usher Syndrome Champions and to gain support for those with Usher syndrome.

Thanks office for meeting with us to support Usher syndrome. And thanks to for bringing us all together

Just because it’s the end of January doesn’t mean it’s too late to set some goals for the year. It’s never too late to change for the better.

Summer is officially over. As the days get shorter and we experience more darkness than light, remember those moving toward darkness everyday and help us . We promise to keep going, do you?

Heading to DC to make some noise for the Usher syndrome community.

It’s that time of year, again! Time to raise awareness of Usher syndrome, the leading genetic cause of deaf blindness.

So put on those sunglasses, post a selfie and

We raise awareness as we approach the Fall Equinox, which is representative of the slow progression of vision loss that begins with the lose of night vision; the Equinox is the beginning of more darkness than light each day.

The official Usher Syndrome Awareness Day is September 17, 2022.

This year, the Usher community, led by the Usher Syndrome Coalition, is going to Capitol Hill to make noise and change things for our community.

Follow us for more!

Summer is almost over and so is the longer daylight hours. As we approach the Fall Equinox, help us raise awareness of Usher syndrome and those who are increasingly losing their vision beginning with night blindness.

Happy Summer Solstice! Today is the longest day of the year in the Northern Hemisphere and the official first day of summer. Enjoy the extra daylight and remember those who are trying to keep “sunshine” in the lives of those losing sight to Usher syndrome.

March 3rd is World Hearing Day. Why March 3rd? That is the birthday of Alexander Graham Bell, known as the “inventor” of the telephone. But did you know that Bell’s mother and wife were both deaf? It was his pursuit of something to communicate with the deaf that led to later science and inventions that changed the world. FUN FACT: Bell was born in Scotland, just like Charles Usher!

March 2 is the birthday of Charles Usher, the Scottish ophthalmologist for which Usher syndrome is named. His 1914 treatise, On the inheritance of retinitis pigmentosa, which was a continuation of the work of two German ophthalmologists, Albrecht con Graefe and Richard Liebreich, recognized the relation of deafness and blindness in a group of individuals and family members.

“When you hear hoofbeats, think horses not zebras.”

February 28 is Rare Disease Day. Why is the zebra used to represent Rare Disease? Because when doctors are diagnosing disease, they are told to “think horse, not zebra.” But with genetic disorders, think zebra. Over 70% of all rare diseases are genetic.

There are over 300 million people worldwide living with a rare disease. Let’s use today to remind policymakers and the public that these lives are important and deserve treatments and support.

Happy Valentine’s Day! But did you know the story behind Saint Valentine?

It is said that Valentine was imprisoned for trying to convert the “king”, but while there, one of his guards brought his deaf and blind daughter to see him. He is said to have cured her deafness and blindness.

Now, we won’t wait for a saint, but we will continue to try to find a treatment for vision loss for those with Usher syndrome.

And we thank Saint Valentine for spreading love and kindness on this day every year Kind

New day, new year, infinite possibilities. Take advantage of them all. Happy 2022!

Happy Thanksgiving! Even if you don’t celebrate, take a moment to be thankful for what you have, because there is always something to be thankful for.

Today is officially Usher Syndrome Awareness Day. Help us raise awareness of Usher syndrome, the leading genetic cause of DeafBlindness, and the need to for those losing their vision to Usher. Post a picture in sunglasses and Want to learn more, go to www.usher2020.org and

Usher Syndrome Awareness Week is here! Help us spread the word about Usher Syndrome, the leading cause of deaf/blindness. This year, we want everyone to know that treatments are closer than ever. We can help Take Back The Light for those going blind because of Usher Syndrome. Post a picture in sunglasses and check out our Give It Up 4 Sight campaign www.usher2020.org.

Usher 2020 updated their info in the about section.

She provides us with everything we need, yet we take her for granted and hold her fate in our hands. Let’s do what we can to help her. Happy Earth Day, Mother Earth.

Thanks so much to for using a model with a cochlear implant to merchandise their new earring collection. Hopefully more in the fashion industry will follow your lead to use individuals with disabilities/differences for a more realistic representation of life.