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 nonprofit organization.


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What is Usher Syndrome

Usher Syndrome is the leading cause of inherited 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 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. Usher Syndrome, including type 1F, affects all regardless of background. However, it is particularly prevalent in the Jewish community. As many as 5% of Ashkenazi Jews carry a genetic mutation for Usher Sydrome, 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.

Zubair Ahmed, Ph.D., at the University of Maryland, has developed a mouse model of the Usher 1F mutation which he is using to test promising drugs and gene replacement. In addition, he is working with Livia Carvalho, Ph.D., University of Western Australia, to develop another approach to gene replacement therapy.

Monte Westerfield, Ph.D., at the University Of Oregon Institute Of Neuroscience, has developed a zebrafish model of the Usher 1F mutation and is testing drugs that hold the potential to halt or slow the progression of vision loss.

Edwin Stone, M.D., Ph.D., at the University of Iowa 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, as well as stem cell therapy using patients’ own skin cells, to halt further progression of vision loss and restore lost vision.

To date our organization has raised over $1.4 million and granted over $1.2 million to these four top researchers.