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Kelly Grover: CEO, Cystic Fibrosis Canada

Cystic Fibrosis Canada is the only national organization dedicated to cystic fibrosis. What we do is we invest in research, we help ensure there’s best clinical care, we advocate for access to needed treatments, we ensure there’s good supports. And, we also have a registry and clinical trials network. So we’re very comprehensive in terms of our services.

Cystic Fibrosis is a fatal, genetic disease, and it impacts multi-organs. And, what happens is people with cystic fibrosis have sticky mucus that stays in their body. And, when you have sticky mucus in your body, it can trap bacteria and you get infection, on infection, which can cause inflammation. And, if you think of inflammation happening over and over in your lungs, there’s scarring, you’re in and out of hospital, and the end result is you would need a transplant.

Erick Bauer: Client, Head of External Relations at Meridian Credit Union

So I was diagnosed at the age of five. You know, at the time obviously as a five-year-old I didn’t really grasp or understand the impact of that moment, and very quickly I came to realize the impact that CF (cystic fibrosis) was going to have not just on my life, but on my family’s life in general.

Kelly Grover: CEO, Cystic Fibrosis Canada

So the mental health burden of cystic fibrosis is significant. People are dealing with the unknown of what they’re going to experience with their future. Should they plan for a future? Shouldn’t they plan for a future? How long are they going to live? Are they going to be hospitalized? Is everybody around them healthy? Are they going to get sick from that?

Erick Bauer: Client, Head of External Relations at Meridian Credit Union

I would say living with cystic fibrosis is intrinsically intertwined with fear – with uncertainty. I know myself, much like other CF patients, I’ve suffered from anxiety, from depression. And that’s a reality as a community we all face. It’s a complex process and one that I’m still learning to deal with even now, 40 years after being diagnosed.

Kelly Grover: CEO, Cystic Fibrosis Canada

Well, the cystic fibrosis community is an outstanding, humbling group of people. These folks work so hard on behalf of each other. They raise money. They host events. They invest in our organization to be able to go further for their community.

Erick Bauer: Client, Head of External Relations at Meridian Credit Union

CF Canada was really a way for me to connect with others who had shared experience and share lived experience as CF patients. And for me that was really crucial because it made me understand that this wasn’t something that was just my burden, this was something that thousands of other Canadians were living with, and that collectively we could work together to make a real change in this disease and in the lives of people with CF.

Kelly Grover: CEO, Cystic Fibrosis Canada

Over the last few years we’ve seen great advancements for people with cystic fibrosis as a new drug has become available and will help some people in our community. But I can’t stress enough – it’s not a cure. And, for many people who have been living with cystic fibrosis for a while – adults – they’ve already had wear and tear on their body. So, they need other solutions. So we have great investments we need to make in research and clinical trials to go even further for people. We need to better understand the clinical care model as people, some people, are taking new medications that make them a bit healthier. Other people are left behind. What does that clinical care model look like? What are the supports people need to manage their mental health or anxiety that they still face?

So, there’s much more work to be done because there’s so many things we don’t have answers to. That’s the work that we’ll continue to do.

Erick Bauer: Client, Head of External Relations at Meridian Credit Union

When I think about a message that I would share with potential donors, or donors that are still on the fence about giving to Cystic Fibrosis Canada, I would encourage them to come to the table, you know. Learn a little more about the organization. Learn a little more about cystic fibrosis in general.

Kelly Grover: CEO, Cystic Fibrosis Canada

So to those of you thinking of donating to Cystic Fibrosis Canada, I’d say come aboard! We have a great track record of success, and you can make a very big difference in the lives of people who are living with a fatal disease

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