USH Ambassadors for Virginia - Megan and Tim

Megan Lengel

Image description: Megan, a young white woman with glasses, wavy brown, shoulder-length hair parted on the side, wearing a blue t-shirt, smiles at the camera:   

Transcript: Hi everyone. My name is Megan Lengel and my name sign is the letter "M" in ASL, brushed down your cheek twice. I am one of the two ambassadors in Virginia in the United States, and I live in Fairfax, Virginia, which is about half an hour south of Washington, D.C. I have Usher type 1b and I also have a  bachelor of science in psychology and sociology from the University of Mary Washington from which I graduated in the spring of 2019. I have been a part of the Coalition's Ambassador Program for about half a year, give or take and,  in that time, I've been mainly focused on outreach to community members and to professionals within and outside of the deafblind community, And I have been working on a mental health FAQ with the other ambassador in Virginia, Tim Chambers. I've been working on a Google resource sheet for Black people with disabilities, which we are planning on duplicating some of the resources in there to create a separate resource sheet specifically for Black people within the Usher community. I've been working on that with Jessica Chaikoff, who is also a part of the Usher community. She has 1F and she and her family-run, and are heavily involved in, the Usher 1F Collaborative, which is one of the Coalition's USH partners. I have been working on moderating the Facebook Young Adult Support Group and I'm also the Coalition's Young Adult Coordinator, and I've also been on the planning committee for this conference. So, yeah, that's basically it for me. Um. I know that Usher can be really scary and really isolating at times,  but it doesn't have to be isolating, it doesn't have to be scary alone. So I hope that this video encourages all of you watching to reach out to any one of the amazing ambassadors. They're all so amazing in their own ways and, whether you need resources, community support, advice, or just a chat, one of the ambassadors will definitely be able to help you. So, yeah, thanks for watching.

Contact Megan: ambassador.va@usher-syndrome.org

Timothy Chambers

Image Description: Tim, a white male with short brown hair and glasses, sits at a desk in his art studio. Various paintings and art equipment are in the background.

Transcript: Hi everyone! I am Tim Chambers. It is an honor to represent the Usher Syndrome Coalition as an ambassador for the Virginia area, and to be an encouragement for those of you who are dealing with Usher syndrome, or know somebody who was was diagnosed with Usher syndrome . Twenty-seven years ago when I was 30 - I'm an artist and I've known since I was a kid that I was going  to be a professional artist someday - when I was diagnosed, my career was just beginning to take off and the diagnosis totally pulled the rug out from under me. But what I learned was just because I was given that diagnosis, it didn't mean that my life was actually different, and definitely not over.  With all the complicated tests that I had to take, the bottom line was that I was now informed.  In reality, nothing had changed in me from who I was a week prior. I was the same person but now, with the knowledge that my eyes and my ears aren't always going to be as good as I thought they'd be. Nobody awakes knowing the day that's in store for them, but we can choose how we're going to deal with each moment. Usher syndrome or not, anybody can and will run into difficult situations whether it be health, finances, relationships, discrimination, or an accident - you just don't know. Recognizing that each day is a gift helps me to start being proactive with the moments that I was given. Another lesson was to articulate my fears. Instead of a vague, dark cloud hanging over my head that no one can fight, putting my fears into words was the beginning of being able to address them head-on. And you know what? I discovered that my fears were a lot bigger than reality. I discovered that I could creatively adjust, compensate, and live forwardly as I had before, only now I had a greater appreciation for life. It also helped prepare me for when people would tell me what I should and should not do. No one knows better than you - the person living with a disability - what you can and cannot do so I encourage you not to shrink back in fear but to go for your dreams, to go for little successes and big successes. When I was first diagnosed, I showed the retinal specialist my portfolio of my paintings. He flipped through a few pages and then he thrust the book back in my hands and said, "Yeah you better find another profession." It was like he just absolutely shattered my lifelong dream. I was terrified, devastated. But with the support of my wife and a select group of people for non-fear-based counsel, friends, and family, I took a deep breath...um a really deep, long two-year breath...and I started chipping away at the ears and going after things again. You know, it's been 27 years and I'm still painting. In fact, I'm doing my best work ever. And yes, I'm doing that with about 10 degrees of my normal vision. My message to anybody, whether it's with Usher syndrome or something else, is look for opportunities, and go after things. If we run into a brick wall or a dead end, then let's try something else. But you have a wonderful, capable mind that can think, dream, and explore, and I encourage you to use it, whether you can hear or not.

Please don't hesitate to contact me or the Usher Coalition if we can help you in any way. I'm here to encourage you, and the Usher Coalition website has a wealth of resources to help you get on your way to a productive life. You can also read my blog or learn more on my website - The USH View.

Take care.

Contact Tim: ambassador.va2@usher-syndrome.org

Resources for Virginia

  • 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 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.

  • 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.

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

  • The Parent Educational Advocacy Training Center builds positive futures for Virginia’s children by working collaboratively with families, schools, and communities in order to improve opportunities for excellence in education and success in school and community life. Our special focus is children with disabilities.

  • Strives to promote public awareness and understanding of the communication needs and personal challenges of persons who are deafblind. It is estimated that over 16,000 people in Virginia have a combined loss of vision and hearing.

  • The Virginia Department for the Deaf and Hard of Hearing (VDDHH) promotes accessible communication so that persons who are Deaf and Hard of Hearing may fully participate in programs, services and opportunities throughout the Commonwealth.

  • The Infant & Toddler Connection of Virginia provides early intervention supports and services to infants and toddlers from birth through age two who are not developing as expected. This includes children who are deaf/hard of hearing, with our without vision loss.

  • Providing technical assistance to families and educational teams who serve learners with combined hearing and vision loss in Virginia (birth to 21 years old). Check out their Facebook group at https://www.facebook.com/VirginiaDeafblindProject

  • The goal of the SSP Pilot Project is to increase the availability of trained SSPs in Virginia, and to increase access to SSP services for consumers who are deafblind in Virginia. This grant project began in January 2023 and will end in December 2024, unless other funding is found. It is a collaboration between the Virginia Department for the Deaf and Hard of Hearing, the Department for the Blind and Vision Impaired, and Reynolds Community College. The grant is provided by the Virginia Board for People with Disabilities. A Support Service Provider, or SSP, is a specially trained individual who provides access to the community for people who are deafblind. This allows the person who is deafblind to make decisions for themselves based on the visual, environmental, and social information communicated by the SSP.

  • in 2021, the state of Virginia passed a House resolution recognizing Usher Syndrome Awareness Day on 3rd Saturday of September. This coincides with the Usher Syndrome Coalition's international Usher Syndrome Awareness Day, established in 2015.