A different kind of fundraiser, fun & active!

We are spinning for a great cause. Raising money and awareness for

Usher Syndrome Type 1F. We MUST find a cure, so come and spin.

Expert, beginner, wannabe spinner, doesn’t matter your level, we are spinning for Zachary Root and others with Usher Syndrome. 100% of proceeds goes directly for research through the Usher 1f Collaborative, a 501(c)3 organization.


Join the ride




What is Usher Syndrome

Usher Syndrome is the leading cause of deaf-blindness in the world. The major symptoms of Usher syndrome are hearing loss, poor balance and an eye disorder called retinitis pigmentosa, or RP. RP first causes night-blindness, then loss of peripheral vision, and eventually total blindness through the progressive degeneration of the retina. Type 1 is the most severe, with deafness and poor balance from birth and symptoms of retinitis pigmentosa beginning in the first decade of life.  Thankfully, through the use of cochlear implants, children born today with Usher Syndrome 1F are given access to sound at an early age and are able to learn how to listen and speak.  There is currently NO CURE or treatment to save their vision.

Usher syndrome is inherited, which means it is passed from parents to their children through genes. As many as 5% of Ashkenazi Jews carry the genetic mutation for Usher Syndrome and about 2.5% carry the Usher 1F mutation. When both parents carry the mutation, there is a 25% chance they will have a child with Usher syndrome.

Sustainable Pathway to a Cure

Investing in research will enable Usher 1F Collaborative to continue to fund the medical researchers who are currently working to cure Usher 1F and to expand our work and engage additional retinal researchers.

Edwin Stone, M.D., Ph.D., at the University of Iowa Wynn Institute for Vision Research, is developing gene replacement therapy, a technique used successfully for other types of retinitis pigmentosa, to replace the mutated gene in the eye, halting further progression of vision loss and restoring some lost vision.

Monte Westerfield, Ph.D., at the University Of Oregon Institute Of Neuroscience, is developing an animal model of the Usher 1F mutation, with plans to use this model upon its completion this winter to test potential drug treatments.

Zubair Ahmed, Ph.D., at the University of Maryland, has developed a mouse model of the Usher 1F mutation that he is now using both to develop gene replacement therapy for Usher 1F and to test potential drug treatments.

Livia Carvalho, Ph.D., at the University of Western Australia, will be collaborating with Dr. Ahmed to develop gene replacement therapy for Usher 1F.


Investing in a Solution

To date our organization has raised almost $900,000 and granted $637,500 to four top researchers. They are making excellent progress toward a treatment for Usher 1F, adapting gene therapy treatments already either in clinical trial or proven in the lab for other types of Usher Syndrome and retinitis pigmentosa.

A clinical trial is now no longer a dream but a likely reality within the next five years!