Grounded in Science
A balance of research news and well-being for the Usher syndrome community.
We are just over one month away from gathering with the Usher syndrome community at our USH Connections Conference, July 17–19, 2026, in person at the Radisson Blu Mall of America in Bloomington, Minnesota, and online for virtual attendees around the world.
The energy in the community is building, and this issue of Grounded in Science reflects that momentum. Inside, you'll find the latest research updates, community news, and everything you need to know as we count down to USH2026.
A few important updates as we head into the final stretch:
Hotel booking deadline is today, June 10th. If you haven't yet, book your room at the discounted conference rate of $199/night before the group block closes.
There is still time to register for in-person attendance. We'd love to have you in Bloomington. Register here.
A note on accessibility: While the deadline for individualized accommodation requests has passed, USH2026 is designed from the ground up with accessibility at its core, including ASL interpretation on stage, live CART captions, extra lighting, large-print signage, and more.
Can’t attend in-person? Virtual attendance for our full-day general session on Saturday, July 18 is open to all - no registration cap, no matter where you are in the world. Register for virtual attendance here.
We can't wait to see you, in Bloomington or online!
RESEARCH SPOTLIGHT: Odylia update on USH1C
Odylia Therapeutics, a nonprofit in Atlanta, has received a $249,719 grant from Critical Path Institute (C-Path). The money will help support a gene therapy for Usher Syndrome Type 1C (USH1C). Gene therapy is a treatment that delivers a healthy copy of a gene to cells to restore the function of that gene. People with USH1C are born deaf and often begin to lose their vision in their teen years. This vision loss happens because of retinitis pigmentosa (RP), an eye disease that slowly damages the retina, the part of the eye that senses light. Currently, there is no treatment to stop or slow this vision loss. Odylia’s therapy uses a small, altered virus called an adeno-associated virus (AAV) to deliver a functional copy of the USH1C gene into retinal cells. The virus is used like a delivery tool. Early studies suggest the gene is reaching the right cells and doing its job. This grant will pay for safety tests and help the team create a pathway towards the therapy. These steps are needed before the treatment can be tested in people.
Relevant article: |
Check out our Current USH Research page specific to USH subtype as well as other gene-independent therapeutic approaches. |
Join the USH Trust to stay updated on clinical trials and opportunities to participate. Only ten questions need to be answered to register.
IN CASE YOU MISSED IT: Science News Feature
Retinal cells discovered that could repair vision loss
April 7, 2025: One possible treatment for retinal diseases, including all types of Usher syndrome, is called cell replacement therapy. This approach is still being developed, but the idea is to grow new light-sensing cells (photoreceptors) from stem cells and surgically place them into the retina to restore vision.
In this study, scientists discovered a new kind of stem cell called human Neural Retinal Stem-like Cells (hNRSCs). These cells can renew themselves more effectively and may be better at repairing the retina. When researchers transplanted them into the eyes of mice with retinal degeneration, the mice showed improved vision and healthier retinal structure.
What this means for the Usher syndrome community: Cell replacement therapy is still in early stages of development, but it may work for all USH subtypes, regardless of genetic changes. This research helps scientists understand which stem cells might be most useful for building replacement retinal cells in future therapies.
On Well-Being: Awesome Moms with USH - You Are Not Alone
Motherhood is one of the most rewarding and most challenging journeys a person can take. Add Usher syndrome to that journey, and the road looks a little different. The progressive loss of vision and hearing that comes with USH can make everyday moments of parenting feel more complicated, more isolating, and sometimes harder to navigate without someone who truly understands.
That's exactly why Awesome Moms with USH exists.
Awesome Moms with USH started five years ago as a private, supportive community of mothers living with Usher syndrome. They connect through a private group and regular Zoom meetings, a space built around honesty, shared experience, and the kind of understanding that only comes from someone who is living it too. Membership is open by request, and the community spans mothers at every stage, from newly diagnosed moms with young children to experienced moms whose kids are grown and who now show up to offer guidance and perspective to those earlier in the journey.
We asked members why they joined and what the group means to them. Their words say it best.
"While everyone's USH experience is different, and everyone's motherhood experience is different, it's still so helpful to have a community of USH moms to reach out to for support, advice, and connection." — Sarah Turner, USA
"This group has shown me that I am not alone, and that having Usher syndrome does not define my worth. It has reminded me that I can still live a meaningful life and be a positive role model for my children." — Mel, Australia
"It's a safe place where we can share our challenges and frustrations, ask questions, celebrate the wins and laugh. Because we all get it! We're not alone." — Lynne Gilpatrick, FL
"Together, we provide mutual support, forming pillars that underpin our lives. As mothers living with Usher syndrome, we embody a diverse spectrum of ages, experiences, perspectives and ideas. Honouring motherhood with a common bond." — Rose Kamma Morrison, Visual Artist
"Motherhood is a challenge in itself. But it's a whole different journey when you add Usher syndrome to it. These awesome moms…we UNDERSTAND EACH OTHER." — Andi Horstkotte, TN
"My 'children' are grown and out of the house now. I joined this group because I felt I could offer firsthand advice to other amazing USH moms! We are not alone." — Dawn Hilaire, North Port, FL
"Although I've only joined this group two years ago, I feel like I've known these women all my life! No judgments, just others who simply get it!" — Carolyn, Middletown, NJ
"Awesome Moms with USH has a special place in my heart. There aren't many people who know what it's like to experience life the way we do — but somehow, we found them in this group, and that makes my heart happy." — Tara Bowman, Admin, Awesome Moms with USH & Board of Directors, Usher Syndrome Coalition
"Meeting these amazing women, both online and in person, has truly changed my life. It fills my cup in the best way." — Amy Patton, TX
"Being a 'special needs' mom isn't for the faint of heart. My USH diagnosis came long before becoming a parent, and being part of this unique group brings SOLIDARITY and AFFIRMATION into my life. So grateful!" — Kate Hordichok, USA
"Helps me stay connected, supported and confident as I continue to adapt to hearing and vision loss." — Karen, Utah
These voices come from across the United States, Canada, and Australia, from mothers in different stages of life, with different USH types, and different family situations. And yet, the thread running through every single response is the same: connection. Understanding. The relief of not having to explain yourself to someone who already gets it.
As Danay Trest put it: "The assurance of being understood and supported brings comfort and strength when needed. Ushers got us, and we've got each other."
That is what Awesome Moms with USH is all about.
Want to join?
Awesome Moms with USH is open to mothers living with Usher syndrome. To request access to the private Facebook group or WhatsApp group and be included in Zoom meetings, contact Meagan Moore at ambassador.or@usher-syndrome.org
To learn more, visit the link to this YouTube video of some group members talking about how Awesome Moms with USH got started and the impact it's made.
You are not alone. There's a group of women out there who already understand exactly what you're carrying.
Disclaimer: The information and resources on this website are provided for educational and informational purposes only and do not provide medical or treatment advice. Check out our mental health resources page on our website.
USH Tip
USH Summertime Essentials
Summer is here and a few simple tools can make all the difference.
Polarized sunglasses offer strong UV ray protection and help reduce glare in bright conditions.
Wide-brim hats add another layer of defense against harsh sunlight.
Waterproof storage pouch for your hearing aids, cochlear implants, or smart glasses that keeps your devices dry, secure, and protected wherever the season takes you.
USHER SYNDROME DATA COLLECTION PROGRAM
As the world continues to get to know the individuals living with Usher syndrome, it's a great time to join the Usher Syndrome Data Collection Program - the USH DCP - so researchers can better understand this diagnosis.
If you'd like additional support enrolling, please reach out to Yael Saperstein, our Community Enrollment Coordinator for the USH DCP. Yael is an expert on the enrollment process, accessibility, and guiding new participants every step of the way. Contact Yael here: y.saperstein@usher-syndrome.org.
