USH Connections Conference: Rochester, New York + Online

Hosted in partnership with the National Technical Institute for the Deaf

Please join us at the largest gathering of the Usher syndrome (USH) community!

The Usher Syndrome Coalition's USH Connections Conference is an incredible opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of individuals and families living with Usher syndrome and professionals serving the deafblind community.

If cost is an obstacle, please reach out to Julia at j.dunning@usher-syndrome.org.

In 2022, the Usher Syndrome Coalition hosted 355 people at our 14th USH Connections Conference. This was our first hybrid event, with most participants gathering in person and many attending virtually. Check out the USH2022 recap and recordings! For information on past USH Connections Conferences, click here.

Attendees describe this conference as "life-changing," an event with a positive atmosphere and a genuine sense of community. At the USH Connections Conference, hundreds of people who "get it" can connect while discovering valuable resources and learning the latest on developing treatments from leading Usher syndrome researchers. 

We look forward to connecting the USH community again at the USH2024 conference. This event will be held in Rochester, New York, for those who can join in person and live-streamed for those who prefer to attend online.

USH2024 is hosted in partnership with the National Technical Institute for the Deaf (NTID) at Rochester Institute of Technology (RIT). NTID is the first and largest technological college in the world for deaf and hard-of-hearing students. We are excited to host the Usher community in this unique location, giving families the opportunity to explore the RIT campus and NTID programs. A special thank you to the NTID Regional STEM Center with the Alabama Institute for Deaf and Blind for their accessibility support as our Diamond Sponsor.

USH2024 participants have the choice to register for VIRTUAL or IN-PERSON access:

  • Virtual attendance provides access to connection opportunities and Saturday's General Session presentations at the USH2024 hybrid event.
  • In-person registration is ALL-INCLUSIVE, providing Friday afternoon breakout sessions, Saturday full-day conference, continental breakfast, refreshment break, lunch, and evening social (dinner and drinks). 

USHangouts for Children and Youth
USH Partner, Ava's Voice, is thrilled to be hosting another year facilitating the USHangouts Program. USHangouts is an in-person opportunity for children with Usher syndrome, their siblings, and family members of individuals with Usher syndrome to make connections during the USH Connections Conference. Ava’s Voice provides opportunities to empower youth through peer, mentor, and role model connections. At the USH2022 conference in Austin, Texas, there were 38 USHearts connected during the USHangouts experience. At USH2024, Ava's Voice looks forward to spending the day with our USHyouth (9-17 years) as NTID Tigers touring the RIT Campus led by our USH Mentors while our USHlittles (birth-8 years) enjoy our on-site program. 

Ava's Voice is also excited to lead our Advocacy Poster Session. Age has no boundaries...stay tuned for more information to learn how your youth can share their ideas about "how to" educate your community about Usher syndrome!

Stay tuned for more information about how to get involved with our USHangouts Program or to become a sponsor!

Prices

  • $75: Virtual ONLY-Early Bird (ends April 1)

    Saturday's General Session presentations will be live-streamed from the conference venue in Rochester, New York, enabling remote participation worldwide.

  • $75: Child-Early Bird (ends April 1)

    ALL-INCLUSIVE: Friday afternoon children's activities, Saturday full-day children's activities on site (ages 0-8) or youth outing (ages 9-17), continental breakfast, lunch and evening social.

  • $200: Adult-Early Bird (ends April 1)

    ALL-INCLUSIVE: Friday afternoon breakout sessions, Saturday full-day conference, continental breakfast, refreshment break, lunch, and evening social (dinner and drinks).

  • $100: Virtual ONLY-Regular Rate
  • $100-Child Regular Rate (after April 1)
  • $250-Adult Regular Rate (April 1-June 30)
  • $350-Adult Late Registration (July 1-July 19)

In-person tickets are all-inclusive, providing access to Friday afternoon breakout sessions, Saturday full-day conference, continental breakfast, refreshment break, lunch and evening social (dinner and drinks). 

If you need assistance registering online, you can call the Usher Syndrome Coalition at (800) 946-9203 or email Julia at j.dunning@usher-syndrome.org.

Inclusion and Accessibility

  • Participants are encouraged to bring their own Support Service Provider (SSP) if needed. The conference registration fee will be waived for personal SSPs. A limited number of volunteer SSPs will be available upon request.
  • Please include requests for close vision and tactile/ProTactile interpreters and/or an assistive listening device in your registration. Platform interpreters and CART live captioning will be provided at the general session for the benefit of all. 
  • Spanish spoken language translation will be provided upon request.
  • AI-powered interpretation into 20+ languages on your personal device will be provided.
  • Conference materials will be available in a digital format designed for screen reader-braille display and low vision. The final conference agenda will be available two weeks before the conference on the event website and app.

PLEASE NOTE: The deadline to submit requests for special accommodations, ie. interpreters, sighted guides, assistive listening devices, childcare, dietary restrictions, etc. is June 1, 2024. Participants are encouraged to bring their own SSP if needed. The conference registration fee will be waived for personal SSPs. A limited number of volunteer SSPs will be available upon request.

IN-PERSON LOCATION AND ACCOMMODATIONS

DoubleTree by Hilton Hotel Rochester
1111 Jefferson Road
Rochester, NY 14623

The Usher Syndrome Coalition has secured a reduced rate of $121/night at the DoubleTree by Hilton Hotel Rochester. Our in-person events take place Friday, July 19th and Saturday, July 20th.

Click here to reserve your room by June 19, 2024 to ensure rate and availability. You may also call 1(585)475-1510 and ask for Group name "Usher Syndrome Coalition". 

REGISTER

USH2024 IMPORTANT DEADLINES

June 1, 2024: Special Requests (childcare, interpreters, SSPs, assistive listening devices, etc.).
June 18, 2024: Hotel Reservations. Reserve your room at the DoubleTree by Hilton Hotel Rochester at the reduced rate of $121/night here
June 30, 2024: Registration Cancellations. Written cancellations received by June 30th will receive a full refund. No refunds will be issued after June 30, 2024.
June 30, 2024: Registration Deadline.

USH2024 REFUND POLICY
Written cancellations received by June 30th will receive a full refund. No refunds will be issued after June 30, 2024. All refund requests must be submitted in writing to Julia at j.dunning@usher-syndrome.org.

QUESTIONS? Call us at (800) 946-9203 or email Julia at j.dunning@usher-syndrome.org