As we remind you to register for DuchenneConnect or update your information in DuchenneConnect if you are already registered, we wanted to introduce to a young man who has helped solidify the importance of this registry. Christopher Cameron, an 11-year-old from Southern California, is participating in the natural history study and has participated in clinical trials as well. He, with the support of his family, knows the importance of the work being done in Duchenne research and the critical role he can play in furthering this research. It is because of his bravery and selflessness to participate that we celebrate Christopher Cameron, our Featured Voice this March.
Hi Christopher! Tell us a little bit about yourself… How old are you? What grade are you in? What do you want to be when you grow up?
I am 11 years old and I am in the 5th grade. When I grow up, I want to be an artist ...maybe a sculptor.
What do you like doing for fun?
I like to play with a bunch of things like computers and Lego. I also like swimming and I want to learn how to cook.
When did you learn about Duchenne? How do you answer people’s questions about Duchenne?
I started to understand that I had muscular dystrophy when I was around five. When they ask, I tell people that I have a muscle problem and that I get tired if I walk too much. That's why I use a wheelchair at school. I don't really talk about it much.
Tell us about your experience in the natural history study. What have been the biggest challenges? Would you do it again? What do you do on a typical visit?
I like being in the natural history study because the people there are nice and tell good stories. I like how they can make a computer animated image of me when I wear the sticky dots. Some of the other tests are fun too, like the machine they call the "pod racer." I really don't like the tests where I have to get up off the floor and get up from a low stool. Those things are hard for me to do.
Sounds like they keep you busy! Have you participated in other trials?
Yes, I have participated in other trials, including the Sildenafil and Tadalafil dosing studies and the MRI imaging study in Florida. I didn't like the blood draws in the dosing studies and I have to lay still for a long time in the imaging studies, but I do like going to Florida.
The Florida part would be nice! Why is it important for parents to enroll their children in clinical trials? What was the best part of the experience?
I think it's important to learn everything about muscular dystrophy so that we can get medicine for it. I like being in clinical trials and studies because I like to help other people and my mom and I have some fun while doing them.
Well your mom is a cool lady. I’m sure she’s fun to travel with! Do you know what DuchenneConnect is?
No worries. Not many kids do! We will let your mom respond to that one.**
Now one last question Christopher - if you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
Sounds like a great dinner party Christopher! Thanks for your time and thanks for being such a willing participant in the natural history study and other trials!
“DuchenneConnect is a fundamental piece of the clinical trial process because it enables researchers and clinicians to know where potential trial subjects are located, what mutation type they have, their stage of progression, what medications and supplements they are taking, what procedures, if any, they have undergone, their family history, and a wealth of other information.
DuchenneConnect is instrumental in populating, conducting, and analyzing clinical trial data in the fastest and most efficient way possible.
In addition, DuchenneConnect is vital to implementing the best and most up to date standards of medical and psychological care for our patient community.
Duchenne Connect is playing a key role in finding treatments and optimal care components for the entire Duchenne community. If you want to make sure you are not missing information that could benefit you or your child, please register on DuchenneConnect.“
Will Nolan, Communications Director
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