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.

Research:

  • 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.

Resources:

  • 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.

View Presentations:

USH2022 Connections Conference Photos Part 1 of 2
  • Attendees in the ballroom at the USH2022 Connections Conference
    Attendees in the ballroom at the USH2022 Connections Conference
  • Julia, a white woman with short blonde hair, wearing a black dress is standing behind the podium with both arms raised up, looking out into the crowd.
    Julia knows how to get a crowd's attention!
  • Julia giving Krista a hug.
    Julia and Krista
  • Shown are many round tables filled with in-person guests at the Connections Conference.
    A full house!
  • A sign for Assistive Listening Devices.
    Thank you, Phonak, for providing Assistive Listening Devices.
  • A tall video camera pointed at the stage. A few men are sitting at a table filled with laptops consulting. In the distance are two large screens showing the speaker and ASL interpreter.
    Behind the scenes tech set up
  • A behind the scenes view from the technology team who worked to ensure accessibility across all platforms. There are several persons sitting behind a table with many computers.
    Thank you to our amazing technology team!
  • A sign that says Interpreters.
    We provided interpreters.
  • A table for 3 Bridges Sign Language Services with two representatives talking amongst themselves.
    3 Bridges Sign Language Services
  • Several people sitting at a table in the ballroom at the Connections Conference.
    Some interpreters at the USH Connections Conference.
  • At the table two people appear to be watching the speakers, and two appear engrossed in tactile sign.
    Accessibility is our goal.
  • A woman caught mid-sign, sitting at a table, with two others watching her.
    We had some amazing interpreters.
  • Mani, an older Indian male with grey hair, sitting at the table holding onto his white cane. Several people are looking to him with a look of admiration.
    Mani sitting at the table seen with his white cane.
  • Mani standing up and others applauding.
    Congratulations, Mani!
  • Krista giving Mani a hug on stage, congratulating him for winning the Coalition's Foresight Award.
    Congratulations to Mani for receiving the Coalition's Foresight Award.
  • Mani and Krista shaking hands on stage.
    Mani and Krista shaking hands.
  • Mani standing at the podium with a smile on his face.
    Mani at the podium.
  • Mani sitting at the table with his award. The award itself is a clear square plaque with words engraved, supported by an oak colored frame.
    Mani with his award.
  • An artistic photo of Mani's award plaque from behind. The photo is focused on the award and thus Mani and the background are slightly blurred.
    Foresight Award 2022.
  • A white male wearing a blue cap, glasses and a grey sweatshirt stands at the podium. A young man stands next to him with brown hair and also wearing a grey sweatshirt.
    Ethan and Gavin introducing a speaker.
  • Two young males standing at the podium. One is seen speaking into the microphone and the other is standing next to him.
    Ethan and Gavin.
  • The Usher Syndrome Coalition's logo is seen under the Austin Southpark Ballroom's sign.
    Austin SouthPark Hotel Ballroom
  • A representative from Cochlear sitting at a table with the yellow Cochlear banner.
    Thank you, Cochlear!
  • A MedEL representative sitting at a table with a red MedEL cover.
    Thank you, Med-EL!
  • A white woman with brown hair sitting at a table with a blue Advanced Bionics table curtain.
    Thank you, Advanced Bionics!
  • A table for the USH Trust. The table has several stacks of flyers and a sign that says, "Join the USH Trust"
    Join the USH Trust!
  • A representative of Scan Mailboxes sitting at a table with a red and black table cloth.
    Thanks, Scan Mailboxes!
  • A T-Mobile Accessibility representative sitting at her table.
    Thank you, T-Mobile Accessibility!
  • A flyer for DeafBlind Camp. The font is terribly small, but it describes the services provided by this camp.
    DeafBlind Camp Flyer
  • On a table is a sign advertising the brand ClearMask. A few samples of the product blend in with the table cloth.
    Thanks, ClearMask!
  • A stand up banner for DeafBlind Camp of Texas, Jr. Empowering DeafBlind. The website listed is www.dbctx.org
    DeafBlind Camp of Texas, Jr.
  • A young man wearing a hat is standing in front of a banner that has the Usher Syndrome Coalition logo as well as all of the sponsors this year.
    Thank you to ALL of our sponsors this year.
  • A woman with long curled brown hair sits at a table looking at her laptop, while a woman is standing at the table with her white cane.
    Thanks, Sarah, for being a great event planner!
  • A woman, wearing a dark colored shirt and glasses, is sitting at the registration table speaking to a woman with blonde hair and a purple blouse who is bent over to better hear.
    Registration Desk.
  • A woman is holding up the USH 2022 Connections Conference Tote Bag that is a light tan color with all of the Conference sponsors logos on the bag.
    Did you get your tote bag?
  • A young boy is sitting on a chair, wearing a bib, eating his snack.
    Loved meeting the "USH Littles"
  • A young girl is sitting on her dad's knee giving him a big hug, as she looks at the camera.
    Glad so many families could join us.
  • One of the portraits provided by USH Society displayed in the hallway. This one is of an small child in a blue polka dot outfit. She's looking up, away from the camera. In very small print is her story above her photo.
    USH Society's "Shine A Light on Usher Syndrome" Portraits.
  • Three portraits are seen in the hallway from a distance.
    USH Society's "Shine A Light on Usher Syndrome" Portraits.
  • One of the portraits of a young man with glasses. He has a full beard and black hair.
    USH Society's "Shine A Light on Usher Syndrome" Portraits.
  • This portrait is of a young woman smiling, holding her white cane proudly.
    USH Society's "Shine A Light on Usher Syndrome" Portraits.
  • This portrait is of Mani. His eyes are closed and he has a soft smile while holding his white cane.
    USH Society's "Shine A Light on Usher Syndrome" Portraits.
  • Mani sitting on a couch with two females sitting next to him. He has the biggest smile on his face.
    Mani is the center of attention.
  • Mike, a white young man wearing a baseball cap, glasses and a striped red/blue shirt is holding a tablet looking off into the distance.
    Mike from Flight for Sight
  • A young man with brown hair, wearing a grey shirt and black pants is holding his guide dog's harness. His guide dog is a yellow golden retriever.
    Guide dogs are welcome!
  • A table with glasses and two pitchers of sweet tea.
    It was important to stay hydrated with the 100 degree Austin, TX weather!
  • A close up of the buffet style food options that were served for dinner on the last night. Seen is a woman using utensils to serve herself chicken.
    We had some delicious southern themed food.
Go to Previous SlideGo to Next Slide
USH2022 Connections Conference Photos - Part 2 of 2
  • Becca Meyers is standing at the podium, smiling, wearing an orange blouse. She has medium length brown hair that falls to her shoulders.
    Becca Meyers, our keynote speaker.
  • A man with a smile on his face is giving a woman a big hug.
    A warm embrace.
  • Two people communicating via tactile sign language.
    Communication is Key.
  • A group of interpreters standing laughing about something. They're all wearing black shirts.
    Interpreters.
  • Kevin Richmond is the DeafBlind Liaison for the interpreter team. He is smiling whilst standing among his fellow interpreters.
    Kevin Richmond, the deafblind liaison for our interpreter team.
  • Rebecca Alexander and Heather Pavey communicating via tactile sign. A third person is seen holding onto Rebecca's hand as Heather is signing. Heather has a big smile on her face as if she is laughing.
    Rebecca Alexander and Heather Pavey
  • Rebecca Alexander and Heather Pavey communicating via tactile sign. A third person is seen holding onto Rebecca's hand as Heather is signing.
    Rebecca Alexander and Heather Pavey
  • Rebecca Alexander and Heather Pavey communicating via tactile sign. A third person is seen holding onto Rebecca's hand as Heather is signing. They are continuing their conversation.
    Rebecca Alexander and Heather Pavey
  • Roberto Cabrera and Rebecca Alexander communicating via tactile sign language. Behind Roberto is a second interpreter providing environmental cues as they're talking.
    Roberto Cabrera and Rebecca Alexander
  • Jeff Holt, a white balding man, standing at the podium.
    Jeff Holt
  • An older gentleman looking at a printed out slide of the science presentations.
    An attendee studying the presentation slides.
  • In the foreground a team of tactile interpreters working hard to communicate the science presentations by Shannon Boye.
    Tactile interpreters working hard to interpret science.
  • Shannon Boye is a tanned woman with long brown hair and glasses. She's standing at the podium, talking, and has a smile on her face.
    Shannon Boye
  • Susie is a tall white woman with shoulder length brown hair. She's wearing a white shirt, grey blazer and has glasses. She's speaking at the podium,
    Susie Trotochaud
  • Two large screens at the front of the ballroom. One has a view of the ASL interpreter and Susie Trotochaud, the speaker. The other screen has an enlarged view of the powerpoint slide.
    Accessibility
  • Taken from the back of the ballroom, this photo shows the audience during Susie Trotochaud's presentation. The crowd all appear fully engrossed with what Susie has to say.
    Total immersion for our scientists.
  • Jennifer Lentz is speaking at the podium. She is a white woman with shorter light brown hair. She's wearing a white cardigan.
    Jennifer Lentz
  • A slide from a PowerPoint presentation explaining what a splicing mutation is.
    Science Panel
  • The ASL Interpreter is a white woman who has short grey hair and is wearing all black, standing in front of a dark background.
    ASL interpreters hard at work!
  • Jen Lentz giving a PowerPoint presentation. Seen are the screens with the ASL interpreter, Jen Lentz, and a separate screen for the power point slides.
    Jen Lentz giving a PowerPoint presentation
  • A sign that says Child Care. Two arrows point in opposite directions. One arrow points to the left for USH Littles, the other arrow pointing to the right is for USH Youths.
    Thank you, Ava's Voice, for providing childcare!
  • Several USH Youths all smiling wearing a blue shirt that says, "Dream it, Believe it, CrUSH it" provided by Ava's Voice.
    Nothing but smiles!
  • An action shot of the USH Youth crew standing together watching someone, off screen, while they were learning the steps to a dance that they would perform later on.
    Learning a TikTok Dance
  • A serious group photo of the USH Youths wearing their Ava's Voice T-shirts.
    Serious Group Photo
  • A sillier group photo of the USH Youths and most of them have their hands up like they're waving.
    Silly one!
  • A young man with short curly, brown hair is standing at the podium introducing another speaker.
    Conner McKittrick
  • Lane, a woman with brown hair, is seen smiling up at the speaker.
    A proud mom- Lane McKittrick
  • Lane McKittrick helping her son, Conner, off the stage. Conner is holding onto his mom's arm and is using his white cane.
    That's what Moms are for.
  • Conner, Lane and Rebecca standing in a small circle having a conversation.
    Conner, Lane and Rebecca Alexander.
  • A young woman standing at the podium. The ASL interpreter is seen off to the side.
    Elise Faucheaux
  • An attendee with her interpreter. The interpreter is wearing a dark blue shirt and is dark skinned with short black hair. His hand is held out as if he is speaking.
    An attendee with her interpreter.
  • An attendee with her interpreter. The interpreter is wearing a dark blue shirt and is dark skinned with short black hair. His hand is now up to his face as if he is shocked.
    Emotions Conveyed.
  • Becca sitting at a round table in the audience.
    Becca also participated in the Conference
  • Becca Meyers standing at the podium wearing an orange shirt, talking.
    Becca Meyers
  • The audience while Becca Meyers is speaking. They're all looking up at her fully paying attention.
    Becca captivated the audience.
  • Roberto with his interpreters communicating via tactile sign while Becca Meyers talks.
    Roberto Cabrera
  • Becca standing at the podium speaking.
    Becca Meyers Keynote Speaker
  • A middle aged white man wearing a tropical shirt is taking notes.
    Taking notes?
  • A woman with blue hair is communicating via tactile sign with a member of the audience while Becca Meyers speaks.
    So much gratitude for our interpreters!
  • Becca Meyers and Hannah standing together in front of the Usher Syndrome Coalition step and repeat banner.
    Swim teammates reunited!
Go to Previous SlideGo to Next Slide