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.
How would you live your life differently if you knew it was only a matter of time before you went completely deaf and blind?
For many, living with Usher syndrome means living with a sense of urgency to experience as much as you possibly can with the vision and hearing you still have, while also recognizing that every second has the potential to bring us closer to finding treatment to stop further progression and even towards finding a cure.
Rebecca Alexander, the face of the Every Second Counts campaign, is the embodiment of this sentiment. She reminds us that we can live deeply meaningful lives while losing two vital senses AND keep advocating and fundraising for research and treatments.
1. Raise Awareness – Get the word out and amplify the voices of those living with the condition and sharing their lived experiences.
2. Donate – All donations to the Usher Syndrome Society go directly to research projects around the world seeking treatments and a cure for Usher Syndrome.
A huge THANK YOU to the Endeavor5 team and Ryan Porush, who dedicated their time, expertise, and enthusiasm to the creation of this remarkable film.
[VD: A 30 second commercial starring a woman, Rebecca Alexander. The commercial shows the woman waking up, putting on her cochlear implants, using a cane in the streets of New York, taking the subway, working out at the gym, and getting her eyes examined. The video zooms to a close up image of her eye at the end and white text says “When You are Living with Usher syndrome. Every Second Counts. You Can Help:
www.UsherSyndromeSociety.Org” with the Usher Syndrome Society Logo”
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.