USH Connections Conference
July 8-9, 2022 | USH2022, a Hybrid Event in Austin, Texas and Online
In July 2022, the Usher Syndrome Coalition held its first hybrid USH Connections Conference. We added an afternoon of breakout sessions and hosted 250 individuals in person (including about 30 interpreters, accessibility support staff, and volunteers). Overall, 355 participants were present for the event, including virtual attendees.
Our USH2022 conference began with a keynote from Becca Meyers, a Paralympic Gold Medalist, world champion, and advocate for disability equality. Becca also has Usher syndrome and has been deaf since she was born. Becca's keynote set the stage for General Session presentations that covered various aspects of Usher syndrome research and support.
Read the conference transcript and check out the below presentations offered live and pre-recorded to review the research and resource updates provided at USH2022.
- Presentations covered advancements in therapy development using animal models, specifically focusing on USH1B and USH1C.
- Researchers shared the progress in creating a nonhuman primate model for USH1B and developing gene therapy for treating visual impairment in this subtype.
- USH1F was explored in depth, with a discussion on the clinical presentation of vision impairment in USH1F and potential therapies.
- Updates from Usher Syndrome Society-sponsored projects encompassed all Usher syndrome types and USH2A.
- A clinical and research update was provided for USH2C.
- The conference also covered USH3A, introducing BF844 as a promising therapeutic candidate for mitigating visual and auditory loss in this subtype.
- A session was dedicated to understanding USH3B, offering insights into this specific subtype.
- A notable clinical trial, NAC Attack, testing the efficacy of oral N-Acetylcysteine in patients with Retinitis Pigmentosa (RP), was also presented, showcasing the continuous efforts in finding effective treatments for all with Usher syndrome.
- Guidance was provided for parents on collaborating with their child's school to plan for the future, emphasizing the importance of education and support.
- Advancements in hearing technology were discussed, providing insights into the latest innovations to aid individuals with Usher Syndrome.
- A presentation on crafting a career while living with Usher syndrome was offered, empowering individuals to pursue fulfilling professional paths.
- Addressing mental health concerns related to Usher syndrome was a crucial topic, shedding light on the well-being of those living with USH and offering supportive strategies.
- Concurrent workshops were also offered to in-person attendees. These breakout sessions were designed to empower young adults with Usher syndrome, explore Protactile language, and enhance collaboration between parents and schools.
Overall, the conference provided a platform for researchers, clinicians, and individuals affected by Usher syndrome to collaborate, exchange knowledge, and discuss the latest advancements in research, therapies, and support systems.
Krista Vasi and Mani Iyer
Becca Meyers, Paralympic Gold Medalist
Jennifer J. Lentz, PhD & Susie Trotochaud
Martha Neuringer, PhD
Lanya McKittrick, PhD and Edgenie Bellah
Shanna M. Dewsnup, Au.D, CCC-A, FAAA
Trevor Turner, MA
Rebecca Alexander, LCSW-R, MPH
Zubair M. Ahmed, PhD
Mariya Moosajee, PhD
Georgia Horn, Usher III Initiative
Krista Vasi, MPA