How Are We Spreading Awareness


If you want to know what's happening at the Usher Syndrome Society, you’ve come to the right place.

Be sure to check back regularly to get our latest news updates.

We had an incredible evening at our Sight Sound & Strength event at Harpoon Brewery in Boston

The Usher Syndrome Society has gotten to know Shawn Hewson lately and we are proud to share his latest accomplishment!

Gene Therapy Tackles a Common Birth Defect: Deafness
After false starts, researchers are making progress toward treating deafness with gene therapy

On Giving Tuesday, the USH Society began our TACTILE holiday gift cookie sale with proceeds going to promote awareness of Usher syndrome.

On October 15, 2018, in honor of White Cane Day, we began our #CaneStrength campaign to celebrate the achievements of people who are blind or visually impaired and to bring awareness to the red and white cane which distinguishes the user as experiencing both vision and hearing impairment.

Donation to Usher Syndrome Coalition

In honor of global Usher Syndrome Awareness Day, 2018, we donated $10,000 to the Usher Syndrome Coalition in support of their efforts to connect families and researchers around the world.

We continued to spread awareness of Usher syndome internationally through our collaboration with UsherKids Austalia.

Tampa Bay was the last stop in 2018 for Rebecca Alexander and her ceremonial first pitches. On September 14th, her pitch tipped off a worldwide celebration of Usher Syndrome Awareness Day.

Rebecca continues to make her way around the country throwing out ceremonial first pitches. On August 23rd, she visited the home town of Usher Syndrome Society when she threw the pitch for the Boston Red Sox.

Following a successful first pitch for the Chicago Cubs in June, Rebecca Alexander threw the ceremonial first pitch for the Yankees on July 31st to raise awareness of Usher Syndrome.

Our pop-up “Shine A Light On Usher Syndrome” photojournalism exhibit greeted Doctors and Researchers as they entered the 2018 International Symposium On Usher Syndrome in Mainz, Germany.

This year, Rebecca Alexander threw the ceremonial first pitch at 4 baseball stadiums around the country to raise awareness of Usher Syndrome and to raise funds toward a cure. Her first stop was Chicago on June 9th.

Rebecca Alexander and the Usher Syndrome Society had an amazing event at Brooklyn Boulders in Somerville, MA . Rock climbing, high-intensity fitness class, USH education, portrait exhibit, food, Harpoon Brewery, wine and more. A perfect evening! We can't wait until next year's event.

Jake, Dad of 2 year old Rebecca invents a toy to begin teaching his daughter Braille at an early age.

The Usher Syndrome Society has partnered with Wicked Good Cookies to craft a beautiful cookie gift box featuring designs from our TACTILE Collection. Every Wicked Good Cookie box gifted gives back to help find a cure for Usher syndrome.
During this holiday season give a gift that truly appeals to your senses and brings awareness and funding to the loss of our senses - hearing and seeing

This holiday season we are illuminating some local Massachusetts communities with Christmas trees trimmed with portraits of people living with Usher syndrome and cookies from Wicked Good Cookies to bring awareness and funding to help cure Usher syndrome.

Sophia Boccard, diagnosed with Usher syndrome type 2a five years ago, was part of a recent collaborative effort to raise awareness of Usher syndrome in New York City. Usher syndrome, the most common cause of deafblindness, affects four out of 100,000 babies in the United States.

NBC Boston Health Reporter Kristy Lee did an amazing job bringing awareness to Usher syndrome through an interview with Hannah Corderman and her mom Nancy Corderman, Co-founder of the Usher Syndrome Society.

The Usher Syndrome Society will bring awareness to Usher syndrome with an outdoor exhibit in Washington Square Park in New York City

In order to own the Equinox for Usher Syndrome Awareness Day, UsherKids Australia, the Usher Syndrome Society, and the Usher Syndrome Coalition are collaborating to bring global awareness to the most common genetic cause of combined deafness and blindness- Usher Syndrome.

Shine A Light On Usher Syndrome at the Rose Kennedy Greenway, Boston MA.

Arts for USH (Kidz b Kidz) helped to fund this incredible cutting edge research!

one of the winners of the Rare Artist Contest 2016 highlighting Usher syndrome

We had an amazing walk on the darkest day of the year to shine a light on Usher syndrome !

spreading awareness for Usher syndrome and our Arts for USH Winter Solstice USH Walk 2016 Needham , MA.

Come join us for our first Winter Solstice USH Walk to Shine a Light on Usher Syndrome.

When we practice mindfulness, we train our brain to refocus on current surroundings, leaving us in a more peaceful and relaxed state. If you want to practice mindfulness, check out these easy steps.