- Get in the loop: Sign up your child in our USH Trust registry, the largest international registry exclusively for the Usher community. It will assure that you get the latest info on research and will also help to connect you with other families and the Usher community across the country and around the world.
- Join our USH Blue Book (Google Forum), a private email group for families and individuals living with Usher syndrome with more than 600 members, worldwide.
- Sign up and participate in monthly online calls with the FamilytoFamily Communities Project (F2FC). Meet other USH families of school-aged children, and share information, resources, and support. For more information, email avasvoice@gmail.com
- Make lifelong friendships at our USH Connections conference. Presentations, group events, social.
- 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.
- “Meet” others with Usher syndrome through our partner, the Usher Syndrome Society’s photojournalism exhibit and Sense Stories
- 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.
- Download an infographic about Usher syndrome
- 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.
- Read "Advocating as a Family" by Pam Aasen, mom to Ethan and Gavin and USH Ambassador to Canada
- Learn about The Parent and Professional Partnership, also written by Pam Aasen
- Just for Young Adults includes stories/suggestions from college-age students who are passing on their experiences to their younger peers. This group hosts regular virtual meet-ups.
- Our USH Partner, Ava's Voice, hosts USHthis Summer Youth Camp for campers with Usher syndrome, ages 11-14. Youth with Usher syndrome, ages 15-17, can apply to be counselors in training, and young adults with Usher, ages18 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 Ava's Voice FB page
- 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
- Other resources - USA:
Facebook groups
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F2FC brings families together to connect, share information and resources, and offer support to one another in the journey of supporting their family member with deaf-blindness. Each F2FC is comprised of 8-10 family members; is guided by trained Facilitators; meets once per month for 90 minutes via video conference or phone; topics are chosen by the group and include structured conversation and open sharing. Register by August 31st, 2022 for calls starting in September.
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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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Family-to-Family Communities (F2FC) brings families together via distance technology to connect, share information and resources, and offer support to one another in the journey of supporting their family member with deaf-blindness. There is an F2FC group exclusively for parents of children with Usher syndrome.
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A group for Mom's of adult children with Usher to share about their adult child with Usher syndrome--Mom to Mom.
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Interviews with 3 teenagers with Usher syndrome, and parents of youth with Usher syndrome.
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.
Books about Hearing Loss, Hearing Aids and CIs for Children
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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.
