USH Ambassador for Oregon

Meagan Moore

Text Transcript of Meagan's video:

Image description: White woman with short, curly brown hair, smiles at camera. She is standing outside, with greenery is in the background:

Transcript: Hi! My name is Meagan Moore.I have Usher syndrome Type 2A. I am the Oregon USH Ambassador. I live here in central Oregon. I have 3 kids. I am looking forward to connecting with all of you and I just want you to know that we are in it together!

Contact Meagan at: ambassador.or@usher-syndrome.org

  • Caitlin Torcato, a Training and Development Specialist for the Oregon Child Support Program Education Team, was among the 600 rare disease advocates gathered in Washington, D.C., in March for the 12th Annual Rare Disease Week on Capitol Hill. Caitlin joined her sister, Meagan Moore, who is the Usher Syndrome Coalition USH Ambassador for Oregon. Meagan is also one of about 25,000 people living in the United States with Usher syndrome (USH), a genetic disorder that is the leading genetic cause of combined hearing and progressive vision loss.

  • The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of children and adults with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those who join the USH Trust are also the first to learn about the latest research opportunities. Information in the USH Trust is confidential and is not shared outside of the Coalition.

  • Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes - a nonprofit dedicated to accelerating research in the rare disease community. 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, email address) 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.

  • Provides technical assistance, training, and information to support services for children in Oregon who are deafblind. The project serves children from birth through age 21 years.

  • Program and services for youth and adults with combined vision and hearing loss.

  • Programs, activities, videos, other information for individuals managing sight loss to network with others

  • 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.

  • A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.

  • Administered by the USH Ambassadors from Oregon and Washington state, this group is designed to connect those who have Usher syndrome, or a family member, with others in the Pacific Northwest. The hope is to find support, share stories of encouragement, and to know we are not alone!

  • Deb Marinos interviews adults living with Usher syndrome. Great information, insights, and resources!. Video is captioned

  • Oregon Ambassador Meagan Moore explains why she attended her first USH Connections conference in 2022.

  • Oregon's USH Ambassador, Meagan Moore, celebrates DeafBlind Awareness Week with an informative and fun video.