Usher 1F Collaborative is a patient-led research network. The research is driven by a group of patients and their families working together to achieve a cure. No one better understands life with Usher 1F or is more motivated to find a cure than our patients and their families. Working together, we bring attention to Usher 1F and engage our investigators to work toward an effective treatment. Together we are changing the status quo.
"There are countless mothers who rise each day determined to move mountains.”
~Philip Reilly, Orphan
Our Story, Mission & Vision
Our Story
We work to find a cure for and raise awareness of Usher 1F so that all who are affected can realize a future with their vision.
Our success is measured by the research we are able to fund. The speedy pace of our research has treatments in development, potentially moving from lab to clinical trials in a few years. Our dedicated donors and volunteers have fueled these programs.
With two of their three children affected by Usher Syndrome type 1F, in 2013 the Chaikof family made the choice to take action and founded Usher 1F Collaborative. When the Root family’s little boy was diagnosed in 2015, they too made the choice to take action and joined with the Chaikof family to find a cure.
An Usher 1F diagnosis means that the individual will lose both their hearing and their sight. Saving vision is a race against time, with the window narrowing rapidly as time passes without treatment.
Working toward a cure is a mighty effort and requires many people. Since our founding, Usher 1F Collaborative has united families across the globe, from coast-to-coast in the United States to Canada, Australia, Brazil, Israel, France, Germany, Poland, and Sweden. In addition to creating a network of families, Usher 1F Collaborative has provided significant funding and has partnered with major research labs specializing in Usher Syndrome research.
Even as you read this, parents of children with Usher 1F are watching the vision and hearing of their children fade. This disease robs those with Usher 1F of the chance to experience a life filled with all the beauty of our world.
Mission: The purpose of Usher 1F Collaborative is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.
Vision: Working together, we can ensure that no child will face an ever darkening world from Usher Syndrome type 1F and no adult will live in darkness and silence.
What is Usher Syndrome?
Usher Syndrome is a genetic condition characterized by deafness at birth or progressive hearing loss and progressive vision loss.
Symptoms of Usher Syndrome type 1
- Bilateral profound deafness from birth
- Vestibular (balance) problems from birth that can include
- Poor head control as an infant
- Arching of back as an infant
- Late sitting
- Late walking at age 18 months or later and then with poor balance for the first few years
- Decreasing night vision beginning in childhood to adolescence
- For more information on Usher Syndrome, visit the NIDCD website.
Currently, there is no cure for Usher Syndrome. While cochlear implants have greatly ameliorated the most major impacts of deafness for those who receive them as babies, there is no cure for blindness. Early identification and educational programs provide support to those affected, but in a world teeming with major technological advances in medicine, this simply isn't good enough. Targeted research is needed to enable a cure.
If you are unsure about a diagnosis or have more questions, visit our Get Genetic Testing page to see if you or a loved one has Usher Syndrome.
What is Usher 1F - in ASL
Usher 1F patients working globally with Usher 1F Collaborative for a cure
