Who is in your family?
I have lived independently since January 2024
What do you want people to know about your family?
I am a 27 year old with CHARGE syndrome, and I have an apartment in Kansas City, Kansas. I currently work as an Instructional Assistant for the Kansas State School for The Blind, and I have a Bachelors in Psychology from Mississippi State University where I was a member of the Bulldog CHARGE Syndrome Research Lab. I am passionate about education, and the field of Deafblindness. I am excited for the opportunity to be more involved with the CHARGE Syndrome Foundation, and work alongside Takrima Sadikot to support families in our state. I am deaf in my left ear with moderate hearing loss in my right. I have a feeding tube for liquids and supplemented nutrition, but am able to eat more by mouth than I am used to. I was not expected by doctors to do many things such as walk, talk, eat, live independently, go to mainstream school etc but I have proved them wrong and want to help others facing the challenges I did.
Why do you volunteer with the Foundation?
As an individual with CHARGE syndrome the CHARGE Syndrome Foundation has provided me with a wonderful community that I consider family, a lifetime of friendships, and the opportunity to learn from a wide variety of professionals. It has given me a voice, and I know it has meant a lot to many families like mine. I love to be able to give back so the Foundation can continue the important work it has done. I also feel like it’s important for adults with CHARGE to be involved and have a voice in decision making.
What activities do you/your family like to do?
I enjoy reading/writing, watching crime shows (and comedy too!), spending time with family, doing family history research, and traveling.
To contact your Family Liaison, please email [email protected]
