USHthis Summer Youth Camp is a 6-day overnight program designed for youth with Usher syndrome, ages 12–17, who use listening and spoken language. Conducted in English, the camp offers a traditional American summer camp experience tailored to the needs of the Usher syndrome community. Mentors, individuals with Usher syndrome, ages 18-25, serve in leadership roles overseeing the camper’s experience.
Campers and mentors forge instant connections through USHthis camp traditions like the Perfect Circle, Ring the Bell, Teapot, and spirited chants that can be shouted from the rooftops. The opportunity to be surrounded by others who truly understand what you’re going through—without needing to explain—offers an unmatched sense of comfort and belonging.
The USHthis program model focuses on fostering:
Awareness of tools and resources through peer and mentor interactions
After years of educating families and school communities, Ava’s Voice raised enough funds to provide a program for the community, but what type of program?
On Ava’s 13th birthday, she wanted to merge her worlds, so she invited her USHbrothers, Ethan and Gavin, out for a night on the town with her besties. They went and saw Rene’ Pellerin, a comedian with Usher syndrome. After the show, Ava shared her birthday wish with Ethan and Gavin- to have a summer camp for kids with Usher syndrome. Of course the boys were game.
USHthis is the cornerstone initiative of our organization. The unwavering friendship and powerful connection Ava, Ethan, and Gavin had inspired Carly to create the USHthis experience. Carly’s professional role working with the Deafblind community merged with her prior experience in various camp roles to develop the USHthis program model.
The name “USHthis” originated in the summer of 2018 at a Jersey Shore event, where Ava, Ethan, and Gavin bonded while riding waves at a local charity event. After an impressive backflip from Gavin, Carly cheered, “USH THAT!” Gavin confidently replied, “USH THIS!” The phrase stuck, symbolizing the spirit of confidence, empowerment and connection that defines the program.
USHthis was piloted in 2019 in the United States with 13 individuals with Usher syndrome. Following a brief pause due to the COVID-19 pandemic, the program model expanded internationally, launching in the United Kingdom in 2022 through a partnership with Usher Kids UK.
Our dream it. Team consists of dedicated community professionals who are essential to the success of the USHthis program model. Each team member plays a specific role in providing guidance to our crUSH it. Team, ensuring they thrive in their leadership roles at camp.
The USHthis model is carefully designed to support the success of its participants while addressing the unique needs of the Usher syndrome community in a traditional camp environment. Our goal is to implement tools and strategies that help achieve meaningful outcomes without requiring adaptations to the environment.
The USHthis Experience Director plays a pivotal role in creating a transformative and inclusive program for youth with Usher syndrome. With extensive experience in the Usher syndrome community, working with children, and a strong background…
The Camp Director’s primary role is to deliver an authentic and memorable traditional camp experience for all participants. They oversee mentors, guiding them to develop the leadership skills expected of traditional American camp counselors, ensuring…
The USHthis Strength Coach is dedicated to providing emotional support for all participants, creating a safe and uplifting environment throughout the camp experience. They guide participants in exploring their understanding of their Usher syndrome diagnosis…
The USHthis crUSH it. Team Coordinator plays a vital role in ensuring a seamless and impactful camp experience. They oversee the crUSH it. Team members, with a primary focus on preparing mentors both leading up…
The Communications Coordinator for USHthis serves as the essential liaison between participants, families, and the camp team, ensuring a smooth and supportive experience before and during camp. With a strong background in working with children…
The Historical Consultant for USHthis brings years of experience working with the Deafblind (DB) community and plays a critical role in shaping both program development and the onsite experience. The consultant challenges team members to…
The USHthis Camp Nurse is a certified nurse with specialized experience working with individuals with Usher syndrome. Understanding that bumps and bruises can be common, especially for those with vestibular challenges, the Nurse is onsite…
The USHthis Hype Team is the heart and soul of camp, bringing all the excitement and energy you’d expect from a classic American summer camp movie. They ignite the chants, share the history and stories…
The believe it. Team is made up of carefully selected volunteers who have a personal or professional connection to the Usher syndrome community. These volunteers are chosen with the goal of deepening their knowledge and understanding of working with individuals with Usher syndrome.
Whether serving in medical, educational, or community roles, these volunteers gain valuable insights through their experience, fostering greater awareness and enhanced support for individuals with Usher syndrome. By participating, members of the believe it. Team play an essential role in building a stronger, more informed network of allies for the Usher syndrome community.
Program Access Liaisons: Acting as the liaisons between the crUSH it. Team mentors and the crUSH it. Team Coordinator, they work collaboratively with the mentors to address immediate concerns and handle situations in a timely manner. They support connections being formed between mentors and campers. This position is uniquely designed for a young adult who brings a baseline of knowledge and a passion for deepening their understanding of the diverse needs of youth with Usher syndrome.
Program Access Liaisons: Acting as the liaisons between the crUSH it. Team mentors and the crUSH it. Team Coordinator, they work collaboratively with the mentors to address immediate concerns and handle situations in a timely manner. They support connections being formed between mentors and campers. This position is uniquely designed for a young adult who brings a baseline of knowledge and a passion for deepening their understanding of the diverse needs of youth with Usher syndrome.
Our Camp Experience Director, USHthis Camp Director, and four Lead Mentors—Ava, Gavin, Lilly, and Ethan—play a crucial role in supporting the transition to our international programs. These mentors have experienced the program in all its capacities: as campers, mentors-in-training, and mentors. Their deep understanding of the program model allows them to guide and support new mentors as they step into leadership roles in their respective countries.
Expanding Horizons Through International Programs
USHthisUSA is our flagship program, proudly developed and held in the United States. Nationwide, our vision is for USHthis to make an appearance in every state, creating opportunities for connection and empowerment across the country. Each summer, we form partnerships within the host state to meet the unique needs of its local Usher syndrome community. To date, USHthis has been held in New York, New Jersey, Michigan, and our next stop is Wise, Virginia.
Ava’s Voice partners with organizations interested in hosting the USHthis experience to support their local Usher syndrome communities. USHthisUK was piloted in 2022 in collaboration with our friends at Usher Kids UK. Funded by DeafBlind UK, the program alternates its venue annually between Essex and the Lake District. We are honored to continue supporting this successful partnership and its mission to bring the USHthis model to life for years to come.
In 2025, USHthis will launch its first summer youth camp experience in Australia, marking the pilot year for USHthisAUS. In partnership with Usher Kids Australia, this exciting expansion welcomes eligible campers and mentors from the UK and USA. We are thrilled to collaborate with our Australian family and look forward to fostering connections and empowering youth in the land down under for many years to come.
USHthis Director, Brett Booker, describes his experience with USHthis before becoming a member of the Ava’s Voice team.
