Leslie Wieber joined the Research Participant Advisory Council (RPAC) in November of 2022. In addition to the RPAC, Leslie has served on the Family Advisory Council for the Division of Developmental and Behavioral Pediatrics for the past 4 years. She lives in Taylor Mill, KY with her husband of 16 years and her three sons, Brock (14), Drew (13) and Tyrus (11). Her engagement with research began when her 3 sons were diagnosed with Fragile X Syndrome in 2012. They dove right into any and all research studies they qualified for. “We truly believe there are better treatments and maybe even a cure for Fragile X Syndrome, so we continuously participate in research to help ourselves and other families,” Leslie said.

She loves anything outdoors and goes "hiking" with her boys a lot. “My husband is 6'9" tall so we always try to find Bigfoot in the woods because he's ‘big like Dad’! What began as a fun game to get them outside often has turned into people they know sending them Bigfoot themed merchandise and articles from across the country,” says Leslie. Besides hiking, she loves reading, baking, playing in volleyball leagues with friends and traveling on fun little weekend adventures with her family.

“Patients and families are critical in helping the professionals with better treatment in every department of Cincinnati Children's Hospital.” –  Leslie

What motivated you to participate in research?

For us it's always been a no-brainer to participate in research. We have trusted our professionals when they say it is safe for our boys or myself and we have experienced Direct results from research studies we've participated in. Such as when my youngest learned to talk at age 7, by participating in a clinical trial.

Overall, has participating in research studies been a positive experience for you? Please explain.

Besides the direct results we've experienced, participating in research has also allowed my sons to become and stay familiar with the hospital which prevents some fear and anxiety the next time we return. We like that we stay fresh in the minds of our fragile X doctors and research team so that when I have an issue that comes up, they already know our son's well and they can help us tackle whatever we are dealing with. Things like EEGs and blood draws become "easier" because we participate so often.

What would you say to others about research and participating in research?

I would encourage others to give research a try because I think all of us are searching for more personal attention from a hospital that is so large and in our experience the more often you go the more nurses and doctors get to know you and even if they don't see you on a regular basis they are going to remember your name and something about you or your family. When you participate in research you are helping your own family and the greater good of the community. Professionals and researchers cannot further medicine without the help of patients and Families. It feels good to do our part!

How has being on the RPAC helped you?

I think it has reminded me there's a whole wide world of patients and families outside of our special needs world which is why we are at the hospital 90% of the time. Sure, we have friends with complex medical needs, but it is a learning experience to be among families that have research experience in much different parts of the hospital.

What would you say to researchers about the RPAC?...about why they should come to the RPAC?

I would say that many do not know about the research in individual departments. You should absolutely get in front of the RPAC to make your cases known because we are from all walks of life throughout the hospital and we all have our own Circle of friends and family we go back and share it with so the word just constantly keeps spreading.

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital 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, contact Julie Wijesooriya.

Learn more about the Research Participant Advisory Group including the RPAC and WE C-RAB and how they can be a resource for your research.