- USH Trust - sign up your child in the USH Trust, our free, simple, and confidential contact database that will ensure that you get the latest info on research, and connect you with the Usher community across the country, and around the world.
- Download brochures for families, educators, and healthcare professionals from the National Center on DeafBlindness's webpage dedicated to Usher syndrome.
- Join our USH Blue Book (Google Forum), a private email group for families and individuals living with Usher syndrome with more than 800 members, worldwide.
- USHChats - Participate in monthly video calls with parents of kids with Usher syndrome. Share experiences, information, resources, and support. Facilitated by Ava's Voice, UsherKids UK, and UsherKids Australia. For more information, email USHchats@avasvoice.org
- Make lifelong friendships while learning about Usher syndrome at our bi-annual USH Connections conference.
- Watch Usher Syndrome From Their Perspective - a 20-minute video where kids with Usher syndrome and their parents discuss their thoughts and feelings about the Usher diagnosis.
- Read blog posts by our founder, Mark Dunning, describing the early days of the Usher Syndrome Coalition and his journey as a dad to daughter Bella.
- View the webinar: Educational Considerations for Students with Usher Syndrome, where two moms talk about the accommodations their kids needed/received throughout their school years, including college.
- Just for Young Adults - includes stories/suggestions/reflections from college-age students about their experiences.
- Transition Tips in ASL from the Disability Law Center
- Discover USHthis Summer Youth Camp for children with Usher syndrome, ages 12-14. Youth with Usher syndrome, ages 15-17, can apply to be counselors in training, and young adults with Usher, ages 18 to 24 can apply to be lead counselors. Ava's Voice is an official partner of the Usher Syndrome Coalition. For more information about the camp, go to: https://avasvoice.org/ushthis/
- Information in ASL: The "first-ever" series of 25 short ASL videos about Usher syndrome, presented by Kevin Richmond, an adult with Usher. Also includes several scientific USH Talks translated into ASL by native Deaf signers.
- Read Advocating as a Family and Parent and Professional Partnerships by Pam Aasen, mom to Ethan and Gavin and USH Ambassador to Canada.
- USA - Federally funded resources:
- Legacy Publications related to Usher:
Facebook groups
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Participate in monthly video calls with parents of kids with Usher syndrome. Share experiences, information, resources, and support. Facilitated by Ava's Voice, UsherKids UK, and UsherKids Australia. For more information, email USHchats@avasvoice.org
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A group to support parents of kids with Usher Syndrome. We are specifically focused on finding information and treatment.
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A group for Moms of adult children with Usher to share about their adult child with Usher syndrome--Mom to Mom.
Tools for Advocacy
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Creates products and services that are high quality, relevant, and useful to the field of dispute resolution in special education and early intervention.
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Your central “Hub” of information and products created for the network of Parent Centers serving families of children with disabilities
Resources for Children
Resources in ASL
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A collection of videos that have been created primarily for school districts so administration, staff, and teachers are given the opportunity to learn survival American Sign Language (ASL) skills so they can start communicating with DHH students at their school.
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The Rocky Mountain Deaf School offers an online treasure trove of children's books in ASL with voice, captions, and the book on screen.
Children's Books About Visual Impairment
Books about Hearing Loss, Hearing Aids and CIs for Children
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Extraordinary Jordyn and her Bionic Ears is an encouraging story about a young girl passionate about space and self-advocacy. Join Jordyn as she overcomes judgment for her cochlear implant and hearing aid, uplifting children embracing their unique differences.
Author Jasmine Simmons is an audiologist and an USH Ambassador for Florida.
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by Debbie Blackington
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by Rebecca Rissman
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by Melanie Hawkins
"This book is not about hearing loss but rather the unique traits that make us look or feel a bit different. It can help us realize that no matter our abilities, strengths or weaknesses, each of us is precious, rare, and beautiful!" -
by Ashley Machovec
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by Walt Disney Company
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Evren & Kara Ayik wrote this book to uplift children with rare diseases following Evren’s graduation from high school. Evren’s advocacy work for people with Acid Sphingomyelinase Deficiency (ASMD) began in 2017 when he was invited to speak at the FDA in Maryland and in several other states about life with ASMD. He plans to become a special education teacher and now attends California State University, Fresno. His mother, Kara, has been an educator for over twenty years.
