The latest USH blog posts and various news items impacting the Usher syndrome community.
Personal health literacy is defined as the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
On September 16, 2024, AAVantgarde announced that the first participant received a dose in the Phase 1/2 LUCE-1 clinical trial for vision loss caused by Usher syndrome type 1B.
Exploring the challenges of living with Usher syndrome and the importance of disability equity in the workplace.
Attending the Usher Syndrome Coalition's USH Connections Conference for the first time can evoke a wide range of emotions. It can be incredibly empowering to connect with others who truly understand your experience, who "get it." At the same time, it may raise questions about the future, such as, "What will my life be like?" or "What can I do now if there aren’t yet any available treatments?"
Founded in 1995, DeafLEAD provides extensive support to Deaf, Hard of Hearing, Late-Deafened, and DeafBlind individuals.
The benefits of movement are many: movement helps you stay healthy, improves your mental health, and builds community and self-esteem. Here are some tips to make movement and exercise more “Usher syndrome friendly.”
As a mental health provider, I understand that multiple feelings can be true at the same time. It is possible to both value and uphold the ability to self-advocate while sometimes needing a break.
April is Stress Awareness Month. In the Usher syndrome community, additional stressors may be placed on caregivers and the individuals living with Usher syndrome themselves.
Humor has been proven to be a valuable resource in stress management. A good sense of humor won’t cure Usher syndrome but it can help you manage it. If this is something you struggle with, don't worry, you're not alone! Fortunately, humor is a skill that can be learned, with practice.
For better or worse, the media can profoundly influence our views on disability, our beliefs about ideals and cultural norms, and our sense of self. While there is room for improvement, disability representation is becoming more prevalent in the media. This includes the representation of Usher syndrome.
January is Mental Wellness Month. This “On Well-Being” series is for you, by you, the Usher syndrome community. We want to know what topics on well-being YOU would like to dive into.
Emily Shepard of UsherKids Australia recently published a paper titled "Exploring methodologies for establishing prevalence of deafblindness in children: A scoping review" in the British Journal of Visual Impairment.
Navigating the holiday season can be challenging. It’s important to recognize that maintaining a hopeful outlook during times of stress or uncertainty can be a conscious choice! The benefits of a hopeful mindset have been demonstrated to improve one’s well-being in a number of research studies.
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.
This paper looked at 33 publications, which represented the experiences of 187 people with Usher syndrome who received cochlear implants.
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?
Usher syndrome (USH) is classified into three major clinical subtypes (types 1–3), with type 1 being the most severe.
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.
In June 2023, Nacuity announced they completed enrollment in the SLO-RP Phase I/II clinical trial of NPI-001 tablets.
The Usher Syndrome Coalition is a hub for connecting the global Usher community; but what does “community” mean to you?
