Skip to main content

Usher Syndrome Society is Owning The Equinox

Image of 7 portraits of people with Usher syndrome. Text reads: Shine a Light on Usher Syndrome / A rare genetic disease causing combined deafness and blindness / Before their world is left dark and silent.

Upcoming event: September 12, 2017

Usher Syndrome Society's Outdoor Awareness Exhibit in Washington Square Park

Usher Syndrome Society, in collaboration with the Usher Syndrome Coalition, is Owning the Equinox and taking New York City by a storm by bringing awareness to Usher syndrome (USH), the leading genetic cause of combined deaf-blindness in this country and around the world.

WHAT:  Outdoor Awareness Exhibit held symbolically in conjunction with the Fall Equinox, when the light and dark are in balance, to raise awareness for Usher syndrome (USH), the leading genetic cause of combined deafness and blindness.

Washington Square Park will be lined with Portraits of people of all ages living with Usher syndrome along with their personal stories, taken by a NY Times photojournalist, to give a face and voice to this rare disease. It affects more than 400,000 people worldwide, and we need to shine a light on this disease to find a cure.

The third Saturday in September has been named Usher Syndrome Awareness Day, and the Usher Syndrome Society will bring awareness to Usher syndrome with photography, video, information, a simulation experience and creative expression.

WHEN:  September 12, 2017 from 11:00 a.m. – 4:00 p.m.

WHERE:  Exhibit will be held in Washington Square Park - Garibaldi Plaza, Washington Square E, New York, NY 10003

WHO:  The Usher Syndrome Society is a non-profit dedicated to using the Arts to raise awareness and funding for Usher syndrome (USH) to ultimately find a cure. It is crucial to identify as many people as possible who are living with this disease to join the USH Trust and simultaneously bring in funds that will accelerate research.

The Usher Syndrome Society is co-founded by Nancy Corderman, a parent of two children who are living with Usher syndrome, each progressively losing their eyesight and hearing.

Join us to shine a light on Usher syndrome “before their world is left dark and silent”.

A few more events and announcements that might interest you:

Monday, September 11, 2017 will be the debut of Tactile at CGG Home Fashions Showroom for wholesale buyers of home textiles. 

Tactile is a new bedding line created by the Usher Syndrome Society. The co-founder has two children living with Usher syndrome, each progressively losing their vision and hearing. Tactile uniquely debuts with patterns that were inspired by artwork drawn during past Usher Syndrome Society hosted events that blossomed into sensuous textiles with various textures and colors for dressing your bed.

Our new bedding line uses art and touch to heighten your senses and encourages the imagination to feel beauty all around. Every design symbolizes empathy and hope to inspire us to be better people. Each set of Tactile bed linen includes a coordinating cut velvet Braille pillow cover with the letters U S (Usher syndrome). A % of every purchase of Tactile linens goes directly to the Usher Syndrome Society to fund research and accelerate a cure.

Monday evening from 6pm-8pm, we will be hosting an Usher Syndrome Awareness Cocktail Party at Lululemon HUB Seventeen, located on 114 5th Avenue. Here we will explore our senses with storytelling, guest speakers, wine, appetizers and an immersive deafblind experience. (Public event - spreading awareness to those unfamiliar with USH.) 

Tuesday, September 12, 2017 we will hold an outdoor Fall Equinox Exhibit located in Washington Square Park- Garibaldi Plaza from 11:00AM-4:00PM, as part of our continuing Shine a Light On Usher Syndrome Campaign. (Public event - All are welcome!)

The iconic Park in the village will be lined with portraits of people of all ages living with Usher syndrome. Each portrait, taken by the New York Times photojournalist Evan McGlinn, will feature their personal stories. The outdoor exhibit will give a face and voice to those with Usher syndrome in the form of videos, information packets, a simulation experience and culminating in creative expression. All are encouraged to come.

What is Owning the Equinox? The autumnal equinox is the day when daylight and darkness hang in perfect balance, the moment before we in the northern hemisphere slip into darker days. It is a wonderful metaphor for Usher syndrome and the state of Usher syndrome research. We have the power, today, to stop our world from sliding into darkness.

Powered by Firespring