The latest USH blog posts and various news items impacting the Usher syndrome community.
Meet the team behind the Usher Syndrome Coalition's Grounded in Science newsletter and well-being series.
It is with great sadness that we share the news that Dr. William Kimberling passed away on Saturday, November 4th, surrounded by his family.
October 10th is World Mental Health Day, which is why we launched our Grounded in Science Newsletter on this day one year ago. This year, the theme is mental health is a universal human right. In the spirit of this day, we invite you to explore our new compilation of resources for Mental Health on our website.
What does “ableism” mean to you? What does the phrase “internalized ableism” make you think about? Perhaps the beliefs and values society holds about disabled people?
Anticipatory grief is defined as a state of deep, painful sorrow that can occur before an impending loss, such as being diagnosed with a progressive condition like Usher syndrome.
USH Champions achieve legislative win: Report Language on Usher syndrome included in the Senate Labor, Health, and Human Services (LHHS) Appropriation Bill for Fiscal Year 2024. The LHHS Subcommittee funds the National Institutes of Health (NIH), the largest public funder of biomedical research in the world.
Parents, you may have wondered what the future might be like for your children. I know I did, especially early on, right after the diagnosis.
Although uncomfortable, fear is a natural emotion that can protect us from harm. For example, looking both ways before crossing the street is a habit driven by fear of being hit by a car.
The Usher Syndrome Coalition is a hub for connecting the global Usher community; but what does “community” mean to you?
For someone with Usher syndrome, there are very real barriers and limitations to choosing a career that also brings a sense of purpose. But the barriers may not be as limiting as you think.
Usher syndrome affects vision, hearing and balance. It can result in the feeling that the other senses are heightened, causing sensory overload. All of our senses have the ability to ground us in different ways, giving us the power to manage our emotional state at anytime, in any space.
Meet with your Members of Congress and their staffers to share your story about Usher syndrome, the most common genetic cause of deafblindness, and advocate for Usher syndrome research.
Receiving an Usher syndrome diagnosis evokes a lot of emotions. It is overwhelming to be told that you are going deaf and blind or that your child will one day be deaf and blind. It’s completely normal and acceptable to feel fear associated with these losses; fear of progressive loss, fear of the unknown.
Relay Conference Captioning service, or RCC, can help anyone who is deaf or hard of hearing engage in group conversations in a videoconference, multi-party conference call, or webinar.
What does balance mean to you? Usher syndrome is the leading genetic cause of combined deafness and blindness. It can also cause vestibular dysfunction, most often in Usher Type 1 and Usher Type 3.
In 2022, the Usher Syndrome Coalition partnered with ProQR to provide outreach and education for their clinical trial. That trial is now paused. Here are some steps you can take to make sure you're ready for future clinical trials.
With the year 2022 coming to a close, it's important to take moments to pause and breathe. It’s easy to get overwhelmed with everything that the end of the year can bring.
With IP Relay, DeafBlind users can make and receive calls and communicate the way they want to whenever they need to. But what is IP Relay?
As defined by the Oxford dictionary, gratitude is the quality of being thankful; readiness to show appreciation for and to return kindness.
Your story matters, and it is important for your Senators and Representative to know that Usher syndrome affects individuals and families in their home state, as well as in every state across the country.
Did you know that the path to our own improved well-being is also rooted in science? That's why we chose to call this newsletter "Grounded in Science."
The Usher Syndrome Coalition is planning an "USH Day on Capitol Hill" on Wednesday, September 14th to advocate for increased federal funding for Usher syndrome research.
Parenting, in general, is filled with challenges. Being a parent with Usher syndrome can add another layer of complexity. Here, USH moms share their advice for parenting with Usher.