USH Ambassadors for Illinois - Heather, Asiya, and Jon

Heather Clark

A white woman with long brown hair and brown eyes smiles softly at the camera

Hi! My name is Heather Clark and I'm from Illinois. I have Usher syndrome type 1 and I'm Deaf. I grew up in Illinois and have been here my whole life. Now, I'm a stay-at-home mom with my 2 children. I worked for 9 years. I graduated with a bachelor's degree. Now I'm interested in helping other people who have Usher syndrome or who have a child with Usher syndrome, whether they need resources or contact information, I'm here to help you. I'm here to help build community. I'm willing to volunteer at local events and I'm here if you need other information.  Contact me at: ambassador.il@usher-syndrome.org

Image description: White woman with medium, straight brown hair, and a blue shirt smiles at camera. She is standing in a room with beige curtains behind her.

 

Asiya Khan

Young woman stands on a street in front of a river. Her hand touches a basket full of pink flowers on a pink bicycle. She is wearing a brown hijab, black sweater, and long brown dress.

Hi y’all! I’m Asiya and I am currently a full-time college student at Loyola University Chicago, double majoring in biomedical engineering and public health. When I am not doing homework or complaining about my classes, I enjoy working out and watching Netflix. 

I have Usher syndrome Type 1B and a younger brother with the same condition. I chose to become an ambassador for the Usher Syndrome Coalition because I strongly believe that diverse representation is important within the Usher community in order to encourage individuals of different races, religions, and ethnicities to come forward, accept, and understand their condition. Additionally I really enjoy making connections and being more involved within the USH community, who are like a family to me. 

When I attended USHthis Camp USA, led by Ava’s Voice, for the first time in 2023, it changed my life for the better. Having such a strong community helped me look at my condition in a much more positive way. I want to do the same for my USH family. 

If you have any questions, or just want to connect, don’t hesitate to reach out to me at: ambassador.il3@usher-syndrome.org

Jon Schultz

Jonathon Schultz lives in Chicago with his wife, two children, and two dogs. Originally from Detroit, he attended the University of Michigan in Ann Arbor before moving to Chicago to pursue his master’s degree and start his career. With fifteen years of experience in technology startups, Jonathon is passionate about learning and solving problems, whether they’re simple tasks or complex projects. He is a certified yoga instructor and loves to travel. Diagnosed with Usher syndrome type 3A, Jonathon is dedicated to connecting with others in the community, sharing resources, and building supportive networks for individuals and families affected by Usher syndrome. You may contact Jon at: ambassador.il2@usher-syndrome.org

Resources for Illinois

  • 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.

  • ILDBP is the Illinois IDEA-funded Deaf-Blind Children's project. The Illinois State Board of Education contracts with the Philip J. Rock Center and School to administer the goals and objectives for ILDBP.

    ILDBP provides technical assistance, information, and training to address the early intervention, special education, related services, and transitional services needs of children with DeafBlindness and enhance state capacity to improve services and outcomes for children and their families.

  • Camp Lions of Illinois for Blind and Deaf Youth offers eligible youth a week of fun, challenging activities and an opportunity to make new friends with peers of similar abilities. Our mission is for the overall growth of the individual camper in self-confidence, knowledge, independence, leadership, and creativity through a recreational experience geared to individual abilities, from the beginning camper to the returning veteran. Campers enjoy swimming, canoeing, team sports, archery, fishing, horseback riding, cookouts, crafts, artwork and nature programs. Every session offers new opportunities to explore new skills. All for free!

  • Providing Communication Access; Hearing and Assistive Technologies; and Support Services for Persons who are Deaf, DeafBlind and Hard of Hearing.
    Contact Jason Weiland: email JWeiland@anixter.org
    Videophone (312) 957-4865 (Videophone/Voice).

  • 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.

  • ICRE Wood is a Department of Rehabilitation Services (DRS) option for individuals who are visually impaired. Over the years they have developed specialty services for individuals with deafblindness. It is located in Chicago, and offers daytime/commuter or residential programs so people from the entire state can be served.

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