Campbell’s Story

By: Campbell, a 21 year old with a TBR1 genetic change

“I want to learn more about my disorder and possibly even help others that are more severely affected by it.”

What is your relationship like with your siblings?

Me and my sister get along very well, we rarely have few issues and have same sense of humor.

What does your family do for fun?

We all have our own things we do, but we do like watching movies.

Tell us about the biggest hardship your family faces.

The lack of resources.

What motivates you to participate in research?

I want to learn more about my disorder and possibly even help others that are more severely affected by it.

How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?

I found lots of information here and even met other people with it as well.

What have you learned about your condition from other families?

I learned that it’s very rare and that other families experience some of the same obstacles I do.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Do your research, there’s only so much others can do for you before you have to take things on yourself.