USH Ambassadors for Arizona - Shanna and Adam
Shanna is an audiologist and mother of an adult child with type II Usher syndrome. She has spoken extensively about hearing loss and Usher syndrome and is an expert in hearing technology. Dr. Dewsnup has been the motivational keynote speaker for two large conferences, sharing her own personal parent journey through her child’s Usher diagnosis and the impact it has made in her life.
Dr. Dewsnup founded Happy Ears Hearing Center with her husband, Kevin, in Arizona. They have a merged family with 5 children. Her oldest son Brenden, who is now 22 years old, has five degrees of central vision, is an accomplished piano performance major at Grand Canyon University, and lives on campus with ‘Diesel’, his seeing-eye dog.
Watch Shanna's presentation at the 2020 USH Connections Conference, "The Best Hearing Technology for Usher Syndrome."
Contact Shanna at: email@example.com
Adam Bailey is a 34-year-old with USH2A, is hard of hearing and legally blind. He graduated from the University of Washington with a BS degree, and worked as a project manager for large aerospace projects. Adam lives in Arizona with his guide dog Mica. An avid reader and always on the move, he enjoys weight lifting, swimming, hiking, and DIY projects.
Contact Adam at: firstname.lastname@example.org
Resources for Arizona
The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!
Individuals with Usher syndrome who are passionate about research have a new data collection platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, date of birth, address, etc.) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.
The Arizona Deafblind Project provides technical assistance, training, and support for children and youth who have a combined vision and hearing loss, their families, educators, and service providers. The Project has a main office on the Tucson Campus of ASDB, with a satellite office in Phoenix at the Desert Valleys Regional Cooperative program.
Program and services for youth and adults with combined vision and hearing loss.
Provides free telecommunication evaluation, equipment, and training to children and adults with significant vision and hearing loss who qualify. iCanConnect is a national program authorized under the National Deaf-Blind Equipment Distribution Program.
ACBVI is an excellent resource for vocational rehabilitation and mobility/life skills training. They offer recreational classes (like woodworking) and have several clubs (both in-person and virtual). There is also a support group to offer emotional support for people who are working through the loss of going blind.
This page was started to bring together the Usher Syndrome (USH) Community in Arizona and nearby states. Let's help support each other.
A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.