Friday and Saturday, July 8-9, 2022
Austin Southpark Hotel, Austin, Texas + Online
*All sessions are subject to change*
All times in Central Daylight Time (CDT)
| Start Time: | End Time: | Activity: | Details: | Location: |
|---|---|---|---|---|
| 11:00am | 2:30pm | Registration and Check-In | In-Person attendee check-in at the Austin Southpark Hotel, 4140 Governors Row, Austin, Texas | Skylight Foyer |
| 11:00am | 12:30pm | Virtual Parent Session | Hosts: Nilam Agrawal and Shanna Dewsnup, AuD | VIRTUAL |
| 11:00am | 4:15pm | "Shine A Light on Usher Syndrome" Exhibit | Usher Syndrome Society: See details below to sign up for your portrait session | Sweetwaters |
| 12:00pm | 1:00pm | Meet with Exhibitors | Connect with in-person exhibitors: Advanced Bionics, Scan Mailboxes, T-Mobile Accessibility | Ballroom |
| 1:00pm | 2:30pm | Cultivating Mentors in the Usher Community | A new national initiative to develop a mentoring program focusing on youth with Usher syndrome who are interested in career development. This session will include a dialogue about the needs and interests of the community. All are welcome. Coordinated by the National Center on Deaf-Blindness, the Usher Syndrome Coalition, the National Deaf Center and the Helen Keller National Center. | Ballroom |
| 2:15pm | 5:45pm | "USHlittles" Childcare | Ages 0-8, Provided by Ava's Voice | Room 102 |
| 2:15pm | 5:45pm | ”USHyouth" Onsite activity | Ages 9-17, Provided by Ava's Voice: "Peers, Role Models, Mentors, Oh My" | The Oaks Room |
| 2:30pm | 4:15pm | Concurrent Workshops, Choose Between: |
1) Strengthening the Collaborative Partnership with your Child's School: Lanya McKittrick, PhD & Edgenie Bellah (Ballroom) 2) Conversation with other Young Adults: For those with Usher syndrome, ages 18-30 (Southpark A) 3) Protactile: Overview & Evolution of its Language: Roberto Cabrera and Hayley Broadway (Southpark B) | In-Person Only |
| 4:15pm | 4:30pm | BREAK | ||
| 4:30pm | 5:45pm | Addressing Mental Health and Usher Syndrome | Rebecca Alexander, LCSW-R, MPH | Ballroom, In-Person Only |
| 6:00pm | 7:30pm | Virtual Young Adult Conversation | For those with USH, ages 18-30. Host: Megan Lengel | VIRTUAL |
| *7:00pm | 8:00pm (Saturday, July 9 at 10:00am AEDT) | Virtual Young Adults Panel | Open to all. Host: UsherKids Australia, Emily Shephard | VIRTUAL |
*Note your timezone: This virtual session will be hosted by UsherKids Australia on Saturday, July 9 at 10:00am AEDT (Friday, July 8 at 5:00pm PDT / 6:00 pm MDT / 7:00pm CDT / 8:00pm EDT). All USH Family and friends are welcome to join.
Saturday, July 9
The General Sessions will be both in-person and live-streamed to virtual attendees.
| Start Time: | End Time: | Activity: | Details: | Location: | |
|---|---|---|---|---|---|
| 7:00am | 8:00am | Continental Breakfast and Registration | In-Person attendee check-in at the Austin Southpark Hotel, 4140 Governors Row, Austin, Texas | Skylight Foyer | |
| 7:30am | 4:45pm | "USHyouth” Off-Premise "Taste of Austin" | Ages 9-17, Provided by Ava's Voice: USHyouth will be taking a guided tour through Austin and will make stops throughout the day at local landmarks, murals, and get a taste of local grub. | Grab your breakfast and meet in The Oaks Room at 7:30am | |
| 7:45am | 4:45pm | "USHlittles" Childcare | Ages 0-8, Provided by Ava's Voice | Room 102 | |
| 8:00am | 4:15pm | "Shine A Light on Usher Syndrome" Exhibit | Usher Syndrome Society: See details below to sign up for your portrait session | Sweetwaters | |
| 8:00am | 8:15am | Welcome Address | Krista Vasi, Usher Syndrome Coalition | General Session-Ballroom | |
| 8:15am | 8:30am | Keynote Speaker from the USH Community | Becca Meyers, Paralympian | General Session-Ballroom | |
| 8:30am | 8:45am | Progress in New Therapy Development with USH1C Animal Models | Jennifer J. Lentz, PhD | LSU Health-New Orleans, Louisiana & Susie Trotochaud | Usher 2020 Foundation | General Session-Ballroom | |
| Toward a Nonhuman Primate Model of USH1B | Martha Neuringer, PhD | Oregon National Primate Research Center & Casey Eye Institute, Oregon Health & Science University | Pre-Recorded | |||
| 9:00am | 9:15am | Development of a Gene Therapy for Treatment of the Visual Impairment in Usher Syndrome 1B | Shannon E. Boye, PhD | Atsena Therapeutics | General Session-Ballroom | |
| 9:15am | 9:30am | Research Updates from Usher Syndrome Society Sponsored Projects | Jeffrey R. Holt, PhD | Boston Children's Hospital & Harvard Medical School | General Session-Ballroom | |
| 9:30am | 9:45am | Flight for Sight is Taking Off | Mike Walsh | Flight for Sight | General Session-Ballroom | |
| 10:00am | 10:30am | BREAK/NETWORKING | Meet Your USH Family | Foyer/Ballroom | |
| 10:30am | 10:45am | ProQR Usher Syndrome Type 2 Development Program | Andy Bolan | ProQR Therapeutics | General Session-Ballroom | |
| 10:45am | 11:00am | Updates on the Vision and Balance Natural History Studies with USH1C patients | Jennifer J. Lentz, PhD | LSU Health-New Orleans, Louisiana | General Session-Ballroom | |
| 11:00am | 12:30pm | USH Research Panel Q&A | Moderator: Jeffrey R. Holt, PhD | Panelists: Jennifer Lentz, Shannon Boye, Andy Bolan, Susie Trotochaud | General Session-Ballroom | |
| 12:30pm | 2:00pm | LUNCH/NETWORKING | Meet Your USH Family (Parents to pick up USHlittles for lunch 12:30-1:45pm) | Foyer/Ballroom | |
| 1:00pm | 2:00pm | Virtual Parent Session | Hosts: UsherKids UK; Chloe Joyner & Dominique Sturz | VIRTUAL | |
| 2:00pm | 2:15pm | Finding your North Star: Working Collaboratively with your Child’s School to Plan for the Future | Lanya McKittrick, PhD & Edgenie Bellah | General Session-Ballroom | |
| 2:15pm | 2:30pm | Advancements in Hearing Technology | Shanna M. Dewsnup, AuD, CCC-A, FAAA | General Session-Ballroom | |
| 2:30pm | 2:45pm | Crafting a Career with Usher Syndrome | Trevor Turner, MA | General Session-Ballroom | |
| 2:45pm | 3:00pm | Addressing Mental Health and Usher Syndrome | Rebecca Alexander, LCSW-R, MPH | General Session-Ballroom | |
| 3:00pm | 3:30pm | BREAK/NETWORKING | Meet Your USH Family | Foyer/Ballroom | |
| 3:30pm | 4:45pm | “Living with Usher syndrome” Panel Discussion | Moderator: Rebecca Alexander, LCSW-R, MPH | Panelists: Becca Meyers, Roberto Cabrera, Hayley Broadway, Trevor Turner, Lorrie Jones | General Session-Ballroom | |
| 4:45pm | 5:00pm | Closing | General Session-Ballroom | ||
| 6:00pm | 8:00pm | Evening Social | Dinner, drinks and entertainment provided to all attendees | Ballroom |
| Presentation | Speaker | Location |
|---|---|---|
| Toward a Nonhuman Primate Model of USH1B | Martha Neuringer, PhD | On-Demand in Event App |
| USH1F Vision impairment: From clinical presentation to potential therapies | Zubair M. Ahmed, PhD | On-Demand in Event App |
| USH2C - A clinical and research update | Mariya Moosajee, PhD | On-Demand in Event App |
| Usher III Initiative and USH3A | Georgia Horn and Cindy Elden | On-Demand in Event App |
| What is Usher Syndrome, Type 3B | Jamie Abbott, PhD, MS, Genetic Counselor | On-Demand in Event App |
| NAC Attack: A Multicenter Placebo-Controlled Clinical Trial to Test Oral N-Acetylcysteine in Patients with RP | Peter A. Campochiaro, MD | On-Demand in Event App |
| Methods and Materials for Remote Braille Training of DeafBlind Individuals | Rosemary Kurtz | On-Demand in Event App |
| Advocating for Usher Syndrome Research Funding | Krista Vasi, MPA | On-Demand in Event App |
Shine A Light on Usher Syndrome by the Usher Syndrome Society
The Usher Syndrome Society takes portraits of people living with Usher syndrome to give a face and voice to this rare disease. The portraits and stories of each person are displayed in a traveling global exhibit called Shine A Light on Usher Syndrome. With the hope of finding treatments and a cure, this exhibit raises public awareness of Usher syndrome through photojournalism and portrays the many experiences of living with this disorder.
If you would like to be included in the Shine a Light on Usher Syndrome Exhibit, the USH Society will be taking portraits at the Usher Syndrome Coalition's USH Connections Conference on July 8-9th in Austin, TX.
CLICK HERE TO SIGN UP to have your portrait taken.
