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USH2021 Update: USH Connections Conference Agenda, T-Shirt Design Contest, Special USH Partner Programming and more!

Usher Syndrome Coalition USH2021 Virtual logo

Usher Syndrome Coalition


2021 USH Connections Conference
Week of May 10th

Register today and connect in May!

During our USH2021 program, those living with Usher syndrome will take center stage as the experts. There will be something for everyone in the Usher syndrome community. Join us!

Check out some of the special programming made possible by our USH Partners below. A detailed agenda will be available in the coming weeks.


(NOTE: the USH Connections Conference and the Science Meeting on May 13-14 are two separate conferences that complement each other. We encourage you to participate in both!)


"Living with USH" Panel Discussion
1:00-2:30 pm EDT 

Getting to know “USH” Parent Session 1
2:30-4:00 pm EDT (7:30-9:00 pm UK GMT)


Day 1 of Science Meeting: Therapeutic Strategies for Large Protein Coding Genes in Usher Syndrome - Free registration at Usher 1F Collaborative, USH Partner
8:00 am-4:45 pm EDT

Getting to know “USH” Parent Session 2
7:00-8:30 pm EDT (10:00-11:30 am AEST Friday, 14th May)


Day 2 of Science Meeting: Therapeutic Strategies for Large Protein Coding Genes in Usher Syndrome - Free registration at Usher 1F Collaborative, USH Partner
8:30 am-4:00 pm EDT


"Supporting Mental Health in Usher Syndrome" Panel
9:30-11:00 am EDT

USHangout for USHkids (7-11yrs)
11:00-12:00 pm EDT

"Ask the Researchers" Q&A Panel
1:00-2:30 pm EDT

USHangout for USHyouth (12-17yrs)
2:30-4:00 pm EDT


USHangout for USHlittles (0-6yrs)
11:00-12:00 pm EDT 

Register for USH2021

USH Partner: Ava's Voice
Conference Participation

Connecting USHearts Around the World
USH Parent Sessions
(for parents of children of all ages)

Ava’s Voice, Usher Kids UK and Usher Kids Australia are excited to facilitate our Getting to Know “USH” parent sessions for our conference this year. Parents often learn best when connecting with one another, so these sessions provide the opportunity to meet other parents in a private breakout room to share all things USH-related!

After registering for the USH Connections Conference as a parent, you will be invited to register for your preferred Getting to Know "USH" Parent sessions (see schedule below). Please be sure to check your local time zones:

Session Choices: 

Wednesday, May 12, 2021
Getting to know “USH” Parent Session 1
2:30-4:00 pm EDT (19:30 – 21:00 UK GMT)

Thursday, May 13th, 2021
Getting to know “USH” Parent Session 2 
7:00-8:30 pm EDT (10am-11:30am AEST Friday 13th May)

Connecting youth with Usher syndrome

USHlittles (ages 0-6)
Sunday, May 16th 2021
11:00-12:00pm EDT (USA)
Family Circle with host Ava

It’s Family time! Get comfy on your living room couch with Teacher of the Deaf (TOD) and Listening, Speech Language Specialist (LSL), Lindy Powell of Listen Littles, for story time in spoken language and ASL; a great activity to bring awareness to a visual language while building spoken language and literacy skills.

Lindy will also facilitate a playtime session using routine based strategies. During this time families will be able to directly connect with other families of young children recently diagnosed with Usher syndrome.

USHkids (ages 7-11)
Saturday, May 15th
11:00-12:00pm EDT (USA)
Getting to Know “USH”
Hosted by USHbrothers Ethan & Gavin

In this meet and greet kid version, children with Usher syndrome will have the opportunity to meet their peers in Zoom breakout groups led by USH role models to get the conversation started. Role models with Usher syndrome will provide fun ways for the children to engage with one another and will have an opportunity to hear some of their camp stories, a first time for most meeting other kids with Usher syndrome. 

USHyouth (ages 12-17)
The Future of “USH”
Saturday, May 15th 2021
2:30-4:00pm EDT (USA)
with host USHthis Camp Director Brett Booker

Participants will meet Tim Chambers, a professional artist with Usher syndrome. Tim will share his story of artistic success and how he has coped with the challenges of living with Usher.  The session will also include highlights and interactive activities from our USHthis Summer Youth Camp and the chance to connect with peers, role models and mentors with Usher syndrome. They will also learn about opportunities to make connections throughout the year.

Register for USH2021

USH Partner: Usher Syndrome Society
Conference Participation

Shine A Light On Usher Syndrome, Sense Stories, and
USH2021 Connections Conference T-shirt Design Contest

In past conferences, the Usher Syndrome Society has been photographing people living with Usher syndrome and displaying their portraits and stories in the Shine A Light On Usher Syndrome global exhibit. We are excited to share this year's NEW Shine A Light virtual exhibit at our USH2021 Connections Conference.

The USH Society has also created and sold conference t-shirts in previous years as part of their TACTILE collection and we are thrilled to add the official USH2021 annual conference t-shirt to their product line with a design created by one of you.

Lastly, we will be offering an opportunity to view Sense Stories: an exploration of Usher syndrome through video journalism, a project that the USH Society has been working on for the past year and will continue adding new stories for the remainder of this year.

Register for USH2021

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