Learn About The Organizations Behind Us

Coalition Members

Coalition Members help support the mission of the Usher Syndrome Coalition by providing financial or in-kind support for Usher Syndrome Coalition projects. The work we do is made possible through the generosity of these incredible organizations.

  • The purpose of Ava’s Voice is to provide financial assistance to support families in making connections; to advance the understanding of hearing and/or vision loss by funding research; and to provide resources and education to the public about hearing loss, vision loss and deaf-blindness.

    Thanks to the support of Ava's Voice, the Usher Syndrome Coalition will be presenting at the Network of the Americas Conference, Cape Cod, MA, April 2018.

  • Founded in 2002, by two families of children with hearing loss, the Decibels Foundation’s mission is to provide specialized early intervention, educational services, family support, and access to essential technologies for children with hearing loss from infancy through high school. The programs they fund support children from birth through the time that they enter a mainstream educational environment and beyond. More importantly, they help the children by first helping their parents learn how to raise a child with a hearing loss, then helping school systems understand what it takes to educate a child with a hearing loss.

  • Hear See Hope is a 501(c)3 non-profit dedicated to funding Usher Syndrome research. Hear See Hope is a founding member of the Usher Syndrome Coalition and has helped fund many Usher syndrome projects, including the Coalition's annual Usher Syndrome Family Conferences.

  • Help Henry See and Hear supports those in our community who have Usher syndrome, are low-vision or blind or are deaf or hard-of-hearing. They want to further research into vision-related disorders such as Usher syndrome, Retinitis Pigmentosa and other diseases of the eye. They want kids with sensory-impairments to have the same opportunities to have fun and be a kid as their typical peers. They want to educate schools, educators, friends, families, and parents about living with a sensory impairment.

  • The Usher Syndrome Society (Kidz b Kidz) is a non-profit that uses the Arts to create empathy to raise awareness and funding for Usher syndrome (USH).

    Arts for USH and the Usher Syndrome Coalition are collaborating to bring awareness to the most common genetic cause of combined deafness and blindness: Usher syndrome.

    Their 'Shine a Light on Usher Syndrome' campaign aims to give a face and voice to Usher syndrome through photo journalism and Art. The goal: to build empathy and awareness about this disease, in the hopes of finding new treatments and, ultimately, a cure.

    The Usher Syndrome Coalition thanks Arts for USH for their support of funding the expansion of the USH Trust.

  • 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.

  • Usher 1F Collaborative is a 501c3 nonprofit foundation whose mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.

  • UsherKids Australia is a network established to advocate for children diagnosed with Usher syndrome, a rare genetic condition characterized by hearing loss or deafness, the progressive loss of vision and, in some cases, vestibular dysfunction. We are parents of young children recently diagnosed with Usher syndrome in Melbourne, and we have struggled to navigate the medical process. In 2015 we formed UsherKids Australia to make the experience easier for those families that may follow us along this path.​

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