USH FAMILY NEWS
Becca Meyers is the only Paralympic swimmer on Team USA who is both deaf and blind. This dual sensory loss has far-reaching effects on an individual’s quality of life and engagement in society. We invite the USOPC to join together with the Usher Syndrome Coalition and other organizations supporting the deafblind community to address and resolve the underlying issues resulting in the denial of Ms. Meyers’s request for essential accommodation.
“Heartbroken” Becca Meyers, a deafblind Paralympic athlete who has Usher syndrome, was told to navigate Tokyo alone. Instead, she takes a powerful stand for future generations.
Mark Dunning, founder of the Usher Syndrome Coalition steps down from the Board of Directors and warmly welcomes long-time supporter Lanya McKittrick, Ph.D., as the new chair of the Usher Syndrome Coalition.
In this USH Talk, Marcia Brooks shares an overview of iCanConnect, the National Deaf-Blind Equipment Distribution Program. iCanConnect provides free equipment and training to people with both significant hearing and vision loss who meet federal disability and income eligibility guidelines. iCanConnect is a national program with local contacts.
Usher Kids UK brings together families of children with Usher syndrome in the United Kingdom. Learn more about our USH Partner.
Hear See Hope has been funding Usher syndrome research for 15 years. Learn more about our USH Partner.
Usher 1F Collaborative's mission is to fund medical research to find a cure for the vision loss of Usher syndrome type 1F. Learn more about our USH Partner.
Ava's Voice empowers youth with Usher syndrome. Learn more about our USH Partner.
Challenge friends and family to create a short video dancing to an Usher song in hopes of getting Usher the singer to perform a benefit concert to raise awareness and funds to find treatments and a cure for Usher syndrome.
Students with Usher syndrome at Gallaudet University are now able to benefit from a scholarship fund established in 2015 in honor of Linda Annala, '70, an influential leader in the deaf-blind community.
HKNC is a one-of-a-kind facility for folks living with deaf-blindness. All classes and training are done one-on-one with individual instructors and focus on orientation and mobility, communication, technology and even organizing money and writing checks.
Andrea Oza, Genetic Counselor at the Laboratory for Molecular Medicine, shares how new advances in genetic testing mean that children and adults with Usher syndrome are being diagnosed at an earlier age than ever before.
An overview of five technological products that can help the visually impaired.
On January 29, 1929, The Seeing Eye, Inc., an organization that trains guide dogs for their blind companions, was founded. Guide dogs help to increase the independence and give back freedom to people who are blind. See more about the beginning of the guide dog movement in the United States from CBS News “Sunday Morning”.
This book is a unique collection of 27 powerful stories by individuals who are experiencing or witnessing the challenges of losing not one, but two senses: hearing and sight.
Thanks to the advocacy efforts of Coalition Board Director Danay Trest, Mississippi Governor Phil Bryant Proclaimed Usher Syndrome Awareness Day on September 17th, 2016.
In the latest Mediaplanet USA, Nancy O'Donnell, director of the International Usher Syndrome Registry reminds us of the importance of being recognized as someone with - or a parent of a child with - Usher syndrome. Of the 400,000 people worldwide dealing with Usher syndrome, the research community is in touch with less than 1%. We aim to change that: https://www.usher-registry.org/
USA Today helps shine a spotlight on Usher syndrome in Mediaplanet's Vision and Hearing Health supplement: "Early Diagnosis is Critical for Children with Usher Syndrome" and "The Power of Community: Usher Syndrome Families Inch Closer to a Cure"
Hanna Cluley shares her story about "No Barriers," a great program for people with special needs.
The Helen Keller National Center (HKNC) is pleased to announce the Summer 2015 issue of CONNECT!, an online publication that keeps you informed about HKNC’s many activities.
Elite paratriathlete Katie Kelly, who has Usher syndrome, is chasing qualification for the world championships in Chicago, to reach "her ultimate goal of competing for gold at next year’s Rio Paralympics and working to make sport more accessible for children experiencing disability.
Becca Meyers, an elite para-swimmer from Maryland who has Usher syndrome, won an ESPY award on July 15 for Best Female Athlete with a Disability.
USA Today helps shine a spotlight on Usher syndrome in Mediaplanet's Vision & Hearing Health supplement.
Your donation helps us support and educate families, expand the Usher Syndrome Registry and use the power of an energized community to raise awareness and increase federal funding for Usher research.
We believe the key to finding viable treatments for Usher syndrome is the development of a strong Usher syndrome community, our #USHFAMILY. Please join our growing #USHFAMILY today and support our efforts by making a tax-deductible gift to the Usher Syndrome Coalition.
Rebecca Alexander brings attention to Usher syndrome in her new memoir, available now.
Join David and help us bridge the gap between researchers and families through your tax deductible gift of $25 or more.
Molly Watt won the National Young Deafblind Person of the Year award from Sense in the UK because of her exceptional contributions to raising awareness of deafblindness. Molly has Usher syndrome.
The Helen Keller National Center (HKNC) has announced the latest issue of CONNECT!, an online publication about HKNC’s many activities.
Kevin Frost took home all four gold medals awarded at the Paralympic Open Blind Cup in Chelyabinsk, Russia, setting four world records.
A new Yahoo group for parents of children with Usher Syndrome has been started!
Join Usher Life, a forum for discussing day-to-day life for patients and families with Usher syndrome, and Usher Science, a forum for discussion of research and medical topics related to Usher syndrome!
You can find our daily Twitter updates at: http://twitter.com/UsherCoalition
Rebecca Alexander, author of Not Fade Away, was featured on NBC’s TODAY show
One of the fastest speed skaters in the world has Usher syndrome type 2. Kevin Frost, 41, is ranked 19th internationally.