Every Second counts

A groundbreaking awareness campaign to change the future of Usher syndrome

“Every Second Counts” is a call to action and a vivid exploration into the lives of those affected by Usher syndrome, a rare genetic disorder causing the progressive loss of combined deafness and blindness. The campaign underscores the sense of urgency felt by individuals living with Usher syndrome, who are seeking to live full, meaningful lives, while actively striving to find effective treatments and ultimately, a cure.

When you are going deaf and blind

Every Second Counts

A prominent voice featured in the Every Second Counts campaign is award-winning author, psychotherapist, keynote speaker, disability rights advocate, and extreme athlete, Rebecca Alexander. In this 30-second commercial, Rebecca, who is living with Usher syndrome, provides an authentic and intimate perspective on this rare disease aimed to educate and inspire hope.

When you are going deaf and blind

Every Second Counts

A prominent voice featured in the Every Second Counts campaign is award-winning author, psychotherapist, keynote speaker, disability rights advocate, and extreme athlete, Rebecca Alexander. In this 30-second commercial, Rebecca, who is living with Usher syndrome, provides an authentic and intimate perspective on this rare disease aimed to educate and inspire hope.

Shining a light on Usher syndrome

Times Square Takeover

The “Every Second Counts” campaign is featured on nine iconic billboards in the heart of New York City – Times Square. The billboards showcase the powerful photographs capturing the diversity of the USH community from our Shine A Light on Usher Syndrome global portrait exhibit, alongside the arresting footage of Rebecca Alexander, a symbol of strength and the face of our campaign.

You Can Help

Currently there are no treatments or cure for Usher syndrome, but the Usher Syndrome Society is working hard to change that. Every donation made to the Usher Syndrome Society goes directly towards funding groundbreaking hearing and vision research in labs around the world.