The clinical trial process is complicated and confusing. At this year’s Annual Connect Conference, PPMD wanted to shed light on what the experience was like for parents, clinicians, industry, and most importantly, patients. For our final panel, we assembled four young men who have had experiences in different trials to talk about what it was like. Included in this amazing discussion were Jack and Nolan Willis, 10-year-old twins from Fayetteville, New York. They were candid, honest, and funny. By sharing their insight, the audience better understood what the clinical trial experience is like for younger patients and how selfless these kids are in participating on behalf of all of our sons.
We caught up with Jack and Nolan, busy into their summer break. Luckily they were able to talk to us for a few minutes!
Meet Jack and Nolan
How old are you guys?
Jack & Nolan: 10
What grade are you in?
Jack & Nolan: 6th
What have you been up to the summer?
Jack & Nolan: Going to summer camps (MDA Camp for a week, day camp at a local school for two weeks), swimming, playing video games, adaptive waterskiing.
What do you want to be when you grow up?
Nolan: A pharmacist.
Jack : Architect.
When did you learn about Duchenne?
Jack & Nolan: We started to understand about our Duchenne when we were 6 or 7.
How do you answer people’s questions about Duchenne?
Jack & Nolan: Duchenne is a neuromuscular disease that takes away our ability to regenerate muscle because we were born with an incomplete gene.
Tell us about your clinical trial experiences overall. What have been the biggest challenges?
Jack & Nolan: Traveling every week from Syracuse to Columbus.
Would you do it again?
Jack & Nolan: Yes.
Why is it important for parents to enroll their children in clinical trials?
Jack & Nolan: To help stop Duchenne.
What was the best part of the experience?
Jack & Nolan: Knowing this trial might help stop Duchenne.
You guys are amazing and so selfless in your reasons for participating in clinical trials! Okay, a fun one now. If you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
Jack & Nolan:
Our Olympic hero! Awesome answers guys. Thanks for talking to us and enjoy your summer vacation!
Will Nolan, Communications Director
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