The USH Connections Conference is the largest gathering of the global Usher syndrome community. It provides an invaluable opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of individuals living with Usher syndrome, their families, and professionals serving the deafblind community.

15th USH Connections Conference | July 19-20, 2024 | Rochester, NY + Online 

In July 2024, the Usher Syndrome Coalition held its hybrid USH Connections Conference, hosted in partnership with the National Technical Institute for the Deaf. This was our largest conference ever, uniting the global Usher syndrome community.

We welcomed 482 total participants from 20 countries - that includes 396 in-person attendees and 86 virtual attendees. We also worked with 92(!) Access Providers - interpreters, SSPs/CoNavigators, captioners, etc - in total, this gathering touched 574 lives! Recordings and a recap of the USH2024 Connections Conference are now available!

14th USH Connections Conference | July 8-9, 2022 | Austin, Texas + Online
The USH2022 conference was a hybrid event held in person in Austin, TX, and live-streamed. 
Recap and recorded sessions can be found here.

13th Annual USH Connections Conference | May 2021 | Online

Our USH2021 event took place May 10-16, complementing the Usher 1F Collaborative’s virtual scientific research conference, May 13-14. Recorded live sessions are now available from the USH2021 Virtual Connections Conference:

“Living with Usher Syndrome” with panelists Lawreen Asuncion, Jacob Desormeaux, Divya Goel and Valerie Nordstrom
“Supporting Mental Health in Usher Syndrome” with panelists Rebecca Alexander, Ashley Benton, Deb Marinos and Lisa Rowinski
“Ask the Researchers” Usher Syndrome Q&A with moderator, Dr. Margaret (“Marly”) Kenna and panelists Drs. Jennifer Lentz, Gwen Geleoc and Karl Koehler

USH2020 Virtual USH Connections Week

 Access prerecorded presentations and recorded live sessions in your format of choice - visual, spoken, in ASL, with captions, and/or text transcripts. These presentations will remain in our USH Talks Library for you to discover at your convenience.

Click the links below for conference transcripts and presentation slides from our past events.

Individuals and families who have joined us at USH Connections Conferences gain hope through research, and empowerment through connection.

A Look Back at the USH Connections Conferences (formerly Usher Syndrome Family Conference):

May 2021: 13th annual USH Connections Conference, Virtual

  • 402 Total Attendees from 40 states in the U.S. and 22 additional countries
  • *145 first-time attendees
  • 5 Interpreters (American Sign Language and Spanish spoken language)
  • 55 kids
  • Demographics: 53% parents and/or family members, 29% adults living with Usher syndrome, and 18% professionals and/or researchers serving the Usher syndrome community

July 2020: 12th annual USH Connections Week, Virtual

  • 405 Total Attendees from 39 states in the U.S. and 19 additional countries
  • *169 first-time attendees
  • 4 Interpreters
  • 25 kids
  • Demographics: 46% parents and/or family members, 33% adults living with Usher syndrome, and 21% professionals and/or researchers serving the Usher syndrome community

July 2019: 11th annual USH Connections Conference, Philadelphia, Pennsylvania

  • 382 Total Attendees
  • *205 first-time attendees
  • 57 Interpreters/Support providers/Volunteers
  • 49 kids

July 2018: International Symposium on Usher Syndrome + 10th annual USH Connections Conference, Mainz, Germany

  • 400 Total Participants
  • 250 In-Person Attendees
  • 150 Livestream Participants

July 2017: 9th annual USH Connections Conference, Chicago, Illinois

  • 276 Total Attendees
  • *109 first-time attendees
  • 35 Interpreters/Support providers
  • 29 kids

July 2016: 8th annual Usher Syndrome Family Conference, Seattle, Washington

  • 198 Total Attendees
  • *68 first-time attendees
  • 32 Interpreters/Support providers
  • 26 kids

July 2015: 7th annual Usher Syndrome Family Conference, New Orleans, Louisiana

  • 169 Total Attendees
  • 20 Interpreters/Support providers
  • 23 kids

July 2014: 6th annual Usher Syndrome Family Conference held in conjunction with International Symposium on Usher Syndrome, Harvard Medical School, Boston (3-day event)

  • 300 Total Attendees
  • 32 Interpreters/Support providers
  • 23 kids

July 2013: 5th annual Usher Syndrome Family Conference, Portland, Oregon

  • 144 Total Attendees
  • 24 Interpreters/Support providers
  • 18 kids

July 2012: 4th annual Usher Syndrome Family Conference, St. Louis, Missouri

  • 133 Total Attendees
  • 12 Interpreters/Support providers
  • 27 kids

July 2011: 3rd annual Usher Syndrome Family Conference, Sturbridge, Massachusetts (held in conjunction with Northeast Cochlear Implant Convention)

  • 41 Total Attendees
  • 4 Interpreters/Support providers
  • 4 kids

July 2010: 2nd annual Usher Syndrome Family Conference, Seattle Children's Hospital

  • 100 Total Attendees
  • 25 Interpreters/Support providers
  • 9 kids

June 2009: 1st family conference (called "Frontiers in Usher Syndrome"), Harvard Medical School, Boston (in conjunction with Frontiers in Hearing Loss

  • 80 Total Attendees (Usher syndrome conference only)
  • 125 Attendees at both Usher syndrome and hearing loss conferences