USH Ambassadors for New York - Michele and Cheyenne
Michele Tamasi
Hi! My name is Michele Tamasi. I was diagnosed when I was 19 years old with Usher syndrome Type 2. I wear hearing aids and can communicate with spoken English and American Sign Language. Now, I am 35 years old, and work full-time for ACCES-VR (Vocational Rehabilitation) as a counselor assistant. Being exposed to a field that provides so many resources led me to the Commission for the Blind and the Helen Keller National Center. Living with Usher is a daily struggle, but we all have to find ways to cope and push forward - hence why I started baking from home for fun. Baking, to me, is my outlet. When things tend to get overwhelming/stressful, baking helps give me a sense of calm and peace. View my Instagram account to see my latest creations: Instagram user name: @cheleshomemadesweets
It's important to remind oneself that life is meant to be lived and not feared. Building a community with a strong support system can lead to so many positive outcomes.
Contact me at: ambassador.ny@usher-syndrome.org
Cheyenne Hammond
My name is Cheyenne Hammond and I reside in the Watertown, NY area. I am so excited to be an USH Ambassador for New York State, along with Michele.
I am married to my wonderful husband, Jacob, and together we have 3 amazing children - Aubree, Amelia, and Jackson.
My journey with Usher syndrome started in February 2024. My middle child, Amelia, was born with hearing loss. She failed her newborn hearing screening in 2017, and in 2023 received hearing aids. Her audiologist referred us to an ENT, who then asked us if we’d ever done genetic testing. I had never thought about it! We were then sent to Syracuse for genetic testing, which revealed my daughter has Usher syndrome type 2A. My husband’s and my genetic testing confirmed that we are carriers of this gene. I had never heard of Usher syndrome until then, and I started my search for knowledge and our community. After that, it became my goal to know everything I could and to be as connected with the community as possible to support my daughter and educate her teachers, pediatrician, and our family and friends. I’m very excited to support other individuals and families with my experiences.
You can contact me at: ambassador.ny2@usher-syndrome.org
Resources for New York
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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!
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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.
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For infants and toddlers with disabilities and their families. First created by Congress in 1986 under the Individuals with Disabilities Education Act (IDEA), the EIP is administered by the New York State Department of Health through the Bureau of Early Intervention. To be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay, as defined by the State, in one or more of the following areas of development: physical, cognitive, communication, social-emotional, and/or adaptive.
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The New York DeafBlind Collaborative (NYDBC) is a statewide federally funded grant that provides support to schools, agencies, professionals, and families on behalf of children and young adults with both hearing and vision loss between the ages of 0–21. Anyone in New York State can access NYDBC as a resource on deaf-blindness. All services are free and do not conflict with services listed on the Individualized Education Program that is supported through the school district. NYDBC maintains a statewide child count of children and youth with combined hearing and vision loss, provides training to families and professionals, and acts as a resource on deaf-blindness.
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Program and services for youth and adults with combined vision and hearing loss.
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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.
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Offers a comprehensive, interdisciplinary approach to hearing healthcare through specialized clinical and support services for adults and children.
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A source for detailed accessibility descriptions of leisure locations
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A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.
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The Andrew Heiskell Library operates a books-by-mail program that delivers thousands of recorded and braille titles postage-free. The Talking Books are recorded by professional narrators and sent to you in a digital cartridge format on what is basically a large plastic flashdrive which can be simply inserted into the free talking books machine we send you. The machine is simple to operate, with large tactile and high contrast buttons, self-speaking instructions, and allows you to adjust volume, tone, and speed, set digital bookmarks, skip ahead or back, and automatically save your place. They offer free access to a website called BARD where you can download any or all of their 145,000 audiobooks or digital braille files onto a flashdrive to play and keep. Also offers the software BARD express, a simplified version, as well as a free app called BARD Mobile for iOS, Android, and newer Kindle Fires, to give you instant access to all our audio books and digital braille books on the go. We also offer our members free membership to Bookshare, an online collection of 700,000 scanned titles that are read by your computer's voice, and to Newsline, a dial-up service to hear local newspapers, magazines, and shopping ads read aloud by a computer's voice.
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NYSCB offers an array of programs to help individuals who are legally blind achieve economic self-sufficiency and full integration into society. NYSCB works closely with not-for-profit agencies for those who are blind and deafblind throughout New York State to provide technical, educational, and resource assistance.
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LInks to information and resources on fair and accessible housing in NY and nationally
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Parent to Parent of New York State, which began in 1994, is a statewide not-for-profit organization established to support and connect families of individuals with special needs. We have several offices located throughout New York State staffed by Regional Coordinators who are parents or close relatives of individuals with special needs.
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Dedicated to supporting families with children who are deaf or hard of hearing, regardless of communication modes or methodologies.
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The Rochester, NY, area has an SSP program for the DeafBlind community.
Services for Adults in NY State
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Housing Rights ResourcesLInks to information and resources on fair and accessible housing in NY and nationally
