USH Ambassador for South Carolina - Carly

Hi, I’m Carly Becknell Blakley, and I’m proud to serve as a volunteer USH Ambassador for the Usher Syndrome Coalition in South Carolina.

I was born profoundly deaf and diagnosed with Usher syndrome Type 1F - a rare genetic condition that causes bilateral hearing loss, balance challenges, and progressive vision loss due to retinitis pigmentosa (RP). At just 16 months old, I received a cochlear implant, becoming one of the youngest recipients at the time. Though I am legally deaf and blind, my diagnosis is only one chapter of my story - not the whole book.

I grew up in Fort Mill, South Carolina, where I learned to navigate a world that often wasn't designed for people like me. Facing both visible and invisible barriers sparked my passion for advocacy and accessibility. I earned my degree in Sociology from Winthrop University in 2020, and I’ve since used my education and life experiences to amplify the voices of those with sensory disabilities.

Today, I work in Inside Sales for Commercial Specialty Tires at Continental Tire of the Americas. My role demands both precision and adaptability—skills I’ve developed through perseverance and determination. It also gives me a platform to continue advocating for inclusion and equal opportunity in the workplace.

As a volunteer Ambassador for the Usher Syndrome Coalition, my mission is to raise awareness, support individuals and families affected by the condition, and promote the importance of early intervention and research. Whether I’m engaging local communities, connecting people with vital resources, or sharing my own journey, I strive to build greater understanding and empower others within the Usher community. No one should feel alone in this experience.

I live in Fort Mill with my sweet guide dog, Sharon. She’s more than a support animal - she’s my daily source of independence, connection, and unconditional trust. In my free time, you’ll usually find me surrounded by friends and family - soaking up the sun at the lake, trying out new recipes in the kitchen, or just enjoying the little things. I love to go hunting with my husband, water skiing, crabbing at the beach, diving into a good book, and simply living life to the fullest.

Through every challenge, I’ve made a choice: to show up, speak out, and make a difference. As an USH Ambassador, I’m committed to creating a more inclusive and informed future for all of us living with Usher syndrome.

You can reach Carly at: ambassador.sc@usher-syndrome.org

Resources in South Carolina

  • 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.

  • This project provides information, support, resources, and technical assistance to programs serving children who are deaf-blind, and their families in South Carolina.

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

  • iCanConnect provides people with combined and significant vision and hearing loss who qualify with free telecommunication equipment and training. Each state has their own program. Funding for iCanConnect is provided through the National Deaf-Blind Equipment Distribution Program, NDBEDP.

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