Research Participant Spotlight: Cincinnati Children's RPAC Member Nolan Breitenstein

Nolan Breitenstein, CCHMC RPAC Member

Nolan Breitenstein is a 12-year-old boy with Tourette’s Syndrome and a new member of the Cincinnati Children’s Research Participant Advisory Group (CCHMC RPAC). Along with his mother, Heidi, Nolan attends the monthly CCHMC RPAC meetings to provide feedback from the perspective of a child who has participated in research. Read below to learn more about Nolan and his experience with research!

Tell us a little about you!

I love playing select soccer and any chance I get I am doing something active outside - running 5Ks for charity, playing basketball for my school, tossing football with friends. I just love being outside. If I'm not outside though, you can find me inside reading a book because once I start reading, I can't put it down. I live with my 15-year-old sister, and my mom and I have a wonderful, loving family.

Share about your health and research journey at Cincinnati Children’s.

When I was four years old, I was diagnosed with Tourette Syndrome. Ever since, I have been working to try and find a "cure." I have never liked talking about my condition because I thought I would be made fun of, so I tried to hide it. As I have gotten older, my doctors and my mom taught me that tics aren't something you should be ashamed of, it's something I should be proud of because it makes me stronger by learning to manage them, and it makes me more empathetic to other people's challenges.

I have been working with the Neurology team at Children's Hospital to help me find ways to manage my tics. A few years ago, I heard about a Tourette medication study through my Neurologist, Dr. Gilbert, and it has changed my life. Dr. Gilbert and my wonderful nurse, Sandi Bechtol, have helped me so much throughout my research study journey. They spend so much time at each of my visits answering all my questions and talking about my life outside of the study, which has made me feel like a valued member of the research team. As a kid I don't often feel like I'm making a difference, but being in this study and being asked to join the RPAC has made my voice feel heard and made me feel like I can make a difference even if I'm a kid. Being in RPAC makes me feel like I am important.

Currently, I am on a study drug which I believe is helping me manage my tics. Cincinnati Children's has given me opportunities that not every kid is given, and I joined the study to not only help me, but to also help others. Ecopipam is on its way to being FDA approved and hopefully other people with tics will benefit just as much as I have. I like being on the RPAC because I can give suggestions of how doctors can make things even better for their participants since I know how it feels to be the patient.

How did you hear about the research in which you participated? How were you approached or introduced to the study?

I heard about the Ecopipam study through my Neurologist, Dr. Gilbert. My sister and I have also joined studies that we have seen on the little paper tablets around Cincinnati Children's.

Why did you join the Cincinnati Children’s RPAC? What has been surprising to you about being a member?

When Julie asked me and my mom to join the Cincinnati Children’s RPAC, I was excited to do it because it was a way to help more people. I feel like I'm helping people with tics by being in my study, but this is a way to help all the people who join studies by helping the doctors hear the ideas of an actual participant.

What would you tell your peers, family or community members who are hesitant to participate in research?

I would tell others that joining a research study might seem scary and intimidating, but all of the doctors and nurses at Cincinnati Children's are caring and kind, and they will help things feel less scary. In research studies, even if you don't help yourself, you are helping others by giving data that other people could benefit from, and I think that is worth it. In certain studies, you may have to get your blood drawn or get an EKG like me, but the nurses are great at taking your mind off the less pleasant parts. I can almost guarantee that you will have a positive experience if you join a research study!

About the Research Participant Advisory Group (RPAG). The RPAG includes the University of Cincinnati RPAC, the Cincinnati Children’s RPAC, and the West End Community Research Advisory Board. These are resources available to anyone at Cincinnati Children’s or the University of Cincinnati who are interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, please contact Julie Wijesooriya: Julie.Wijesooriya@cchmc.org.