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Volunteer Advocate
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Clinical trials: A patient’s perspective

My name is Mark Becker and I’m 36-years-old. I’m a secondary school teacher for students with autism and I live with my wife Ana and our dog Chica. At age two, I was diagnosed with cystic fibrosis.

Luckily, my health has been relatively stable. I haven’t had any in-patient hospitalizations, and haven’t been on antibiotics in a while. I’m really diligent about maintaining my health, and about advocating for myself so I sustain my current status for as long as possible.

I’ve been actively participating in cystic fibrosis related clinical trials and research studies since I was 12-years-old. My dad had a career in biology, and he encouraged me to take part as a way for me to learn more about CF, treatments, and to potentially benefit from some of the trials.

My participation in clinical trials has really had a profound effect on my life and my care, and so I wanted to share what I’ve taken away from my experiences. As an adult with CF, I can say that participating in clinical trials has been a really invaluable experience for me and my health, so maybe others will read this and reflect on whether exploring Cystic Fibrosis Canada’s Accelerated Clinical Trials Network (CF CanACT) is right for them.

  1. Taking control – a lot of people struggle with the feelings of helplessness when you have a chronic disease because there’s so little you have control of. But I always felt when I was part of a clinical trial that I was taking some of that control back. It’s been really great for my mental health.
  2. Learning about yourself and illness – one of the reasons I like participating in clinical trials is that the opportunity to learn is invaluable. I’ve learned a lot about CF and my mutation, but also about my personality. It’s been a form of self-care for me.
  3. Access to medication – taking part in clinical trials has been a life-changing experience for me because I was able to access a medication that has, in effect, stabilized my health. I don’t think I would have accessed that medication otherwise.
  4. The sense of community – a tough part of living with CF is the isolation, but by participating in clinical trials, I’ve been given opportunities to create a network of people who understand CF, look out for me, and provide me with information. I’ve been able to grapple with CF better as a result.
  5. Hearing about other trials – a benefit to participating in trials is the access and awareness of other trials going on I could be a candidate for. I’ve participated in trials small and big, from pharma companies, to PHD and Masters’ students. I’m helping the community in my own way, and helping myself too.

To find a clinical trial that’s right for you, visit cysticfibrosis.ca/clinicaltrials for more information.