About Our Organization
Many of you may already know Rebecca Alexander as one of the most upbeat, energetic and inspiring spin instructors in New York, but what most of you can't possibly fathom is that she's suffering from a devastating disease that is rapidly robbing her of her vision AND hearing.
I know it's hard to imagine that someone so vibrant, positive and active is living with such debilitating disabilities, but it's true. Rebecca has Usher Syndrome Type 3. Usher Syndrome is what's known as an "orphan" disease. It's referred to as such because fewer than 30,000 people in the world are afflicted with it. With just 30,000 potential "customers" you can imagine that big pharmaceutical companies have more pressing business opportunities to pursue, so research for Usher Syndrome must be supported elsewhere.
That's why we are organizing this Spin-for-Sight.
Usher III Initiative
In 2007 a progressive research consortium called the Usher III Initiative was established in an effort to identify the cause of, and develop a cure for, Usher Syndrome Type III. The Usher III Initiative was created because no other government agency or foundation in the world is solely dedicated to finding a cure for Usher III, a disease that causes the degradation and eventual loss of two of our most important senses - hearing and sight. Since its beginning, the Initiative has been dedicated to changing the way scientific research is conducted in order to provide help for Usher III patients more quickly.
The Initiative is funding eight leading scientists in the field of retinal and cochlear research at several top universities in the United States and Europe. The Usher III Initiative team works collaboratively towards a common goal. Our team shares findings, data and other materials to advance our efforts towards a cure.