Allison and her son Matthew's Story

Allison, a mother of three, lives with her husband and children in Greensboro, North Carolina. She teaches French at a local high school, and has been teaching for 21 years. Allison is passionate about advocating for research and she specifically advocates for Duchenne Muscular Dystrophy since her middle child, Matthew, was diagnosed with this disease at 21 months. Allison and her family host a 5k/10k race, Miles for Matthew, to raise funds for Duchenne’s every year. In her spare time, Allison enjoys a good book and traveling.

What is Matthew like?

Matthew is a very fascinating kid who is brave and determined with the most infectious laugh. He is somewhat introverted and is fascinated by factual information. He enjoys reading non-fiction books. In the past couple of years, he has really been focused on sports. He can recite any fact concerning basketball or football. He just met the North Carolina Panthers for his Make-a-Wish and the team was shocked by everything he rattled off and knew about sports. He also has a great memory and sense of humor, and he is very sweet. He is just an amazing kid and he has endured a lot.

Share with us Matthew’s most recent clinical trial experience.

The clinical trial Matthew is currently enrolled in began when he was ten years old. The trial is a two-year process and we are about a year and a half into the trial. The trial is for a myostatin blocker that is designed to block the myostatin protein in our bodies which keeps muscles from growing too big. The real appeal to this trial is that every participant is guaranteed to be on the drug at some point. The trial is double-blinded, meaning the only person that knows when the actual drug is being given is the pharmacist.

How is Matthew doing now?

I have noticed a drop in his weight, which gives him more flexibility and ease in movement. However, I cannot say for certain that this change has anything to do with this trial. As for his endurance, he is very slow which is a change from years past. Overall, his mobility has slowed down but it doesn’t seem to be limited. I call him the best patient on the planet because he just goes with the flow and that is how he lives his life.

If anything, what would have made the clinical trial experience better?

In our first trial, we had to travel a long distance, but we made the decision to do so as a family.  We traveled just an hour away for Matthew’s second trial, which was a lot easier. Proximity is very important for most individuals and families. Participating in a clinical trial is better when they are at local facilities so families do not have to travel as far and have time taken away from their daily responsibilities, like work.

When you hear about the mission of Greater Gift, what comes to mind?

I first heard about Greater Gift when I spoke at a Venture Café Winston-Salem in May 2018. Jennifer Byrne was speaking as well. She was sharing some statistics about clinical research and how it is really underutilized by the public and yet it can be a form of healthcare. Many people don’t know to seek this out as a care option for their health issues. I found that to be very positive. It honestly never occurred to me that adults with all sorts of issues can go seek out clinical trials, which I think is brilliant. It is something we should all be aware of. I was excited to connect with Greater Gift and I completely value and agree with their mission. Greater Gift and other advocacy organizations are sharing with the public that clinical trials are an option and specifically with Greater Gift, clinical trial participants do matter and make a difference in medical advancement. It is a win-win for everyone. Furthering science, you are taking care of yourself and you are potentially helping someone else in the future. In my opinion, there is no reason to not explore clinical trials.

What is your hope for clinical trials?

For those that are timid about participating, I hope people know that they are in complete control. If you are uncomfortable or feeling physical or emotional side effects from doing a clinical trial, you can always stop. As long as you know you are in complete control of your progress it is worth exploring. Not only could it benefit you, but it could benefit thousands of other people as well. Whether it is successful or not, the that data influences what happens next. I hope people continue to explore clinical trials as a care option. As for clinical trials in general, I think part of the process that is somewhat challenging is the rigor of the clinical trial process and how strong the controls are instituted by the FDA. When we are dealing with a child who is battling a lethal disease, time is of the utmost importance. I battle with that because I understand that there absolutely needs to be parameters to make sure that everything is safe, but I think we could push the drug timeline forward. I’m speaking from the point of view of a parent, but I wish it would move faster. I wish it did not have to be as cumbersome and as difficult as it is to move from one phase to the next. On the flip side of that, I can see that it is hard for clinical trials to move forward when you can’t find enough candidates. So, in line with what Greater Gift is doing, we need to encourage people to seek clinical trials as an opportunity for hope, better health for themselves and better health for others, even if it is a risk. We need people to really value the process and want to contribute.

Describe clinical trials in three words.

Hope. Empowerment. Progress.