I’m Aware That I’m Rare: Nicole Dempsey (417)
the phaware® interview
Pulmonary Hypertension patient and PHA Canada Board Chair, Nicole Dempsey, celebrates 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9–10 in Ottawa, ON.
PHA Canada invites you to celebrate 15 years of inspiration at this year’s National Community Conference June 9–10! Can’t join in person? Register as a virtual participant!
My name is Nicole Dempsey. I’m a PH patient living in Cambridge, Ontario, Canada. I’m also the board chair for the Pulmonary Hypertension Association of Canada. I’m here today to talk to you about an exciting time as PHA Canada celebrates 15 years of existence and of excellence and of achievements. For that, some exciting news, this year we finally get to have an in-person conference held in Ottawa, Ontario. This will be the first time in several years that all patients across Canada will be able to meet in person.
This year’s conference will be held June 9th and 10th. As all conferences go, it’ll be jam-packed, because it’s only a two-day affair. However, it’ll be a good chance for everyone to connect again in-person with different sessions. Obviously, we’re celebrating 15 years in PHA Canada’s success in uniting the community and representing and amplifying the voices of people affected by PH. That’s very important to us.
Throughout these 15 years, we’ve had so many changes in the organization and so many opportunities of achievement. We like to go by our mission, which is to empower the Canadian pulmonary hypertension community through support, education, advocacy, research and awareness. We’ve had lots of great things that have happened throughout those 15 years, that affected each of those areas.
As we all know, the past three years have been a little challenging for the whole world, and especially for an organization such as PHA Canada, that is there to support their patients and their caregivers. Something that we initiated in 2020, during the height of COVID, was we launched monthly meetup programs. We launched a buddy program. We also did some virtual sessions. We did some virtual conferences. All this was to engage in peer networks and to help reduce isolation. We’ve received awesome feedback from the community, how these online virtual sessions have helped tremendously. It is one thing to get diagnosed with PH, but I think it’s another thing to get diagnosed with PH during a pandemic, so these virtual sessions were really important.
At the upcoming conference, I look forward to seeing everyone in the community. It’s been so long since I’ve been able to see people in person. It will also be nice to put a face to the name, even though sometimes we do see each other virtually. I have been part of the association for the last 10 years, which happens to be the amount of years that I’ve been diagnosed. Almost straight away, I joined PHA Canada in advocating and in educating as much as I can. It’ll be a neat time for the whole community to come together and just celebrate 15 years.
Since my diagnosis, it seems like I just jumped into the PHA Canada organization immediately. It didn’t happen like that, nor had I planned it like that. I’m just a person who’s on a need to know basis. Once I was diagnosed with this disease, I looked into it, I read about it. Through that, I got involved with the association. I had written a letter about some of the scenarios that had happened to me out in the community when I used my accessible parking pass. I’d been approached and told I wasn’t sick or old enough to use this. That reached the PH Association of Canada, and they contacted me. From that point on, that was 2014, they took me under their wing. There was a new ambassador program that they were looking to start. That’s how I jumped in right away after my diagnosis. It helped me. It helped them. From then on, I joined the board.
Now, I’m the first patient chair. I think it was always doctors. We had some caregivers, that’s basically who were the chairs. Dr. Sanjay Mehta had been pushing for a patient chair. Of course I was like, no, never. I don’t want to do this. Then I became chair during the pandemic, so even more difficult time. I always said that I had imposter syndrome, because I had no clue what I was doing. The support that I did have was all virtual, so it wasn’t like I had people beside me to help me along. So yeah, it was a really interesting time. Now PHA Canada obviously is looking to continue on, because I get to finally retire from… I shouldn’t say finally, but I get to retire from the board and they’ll be looking for more patients in the future.
When I was diagnosed, it was kind of a family affair really. Even though my kids were young, they always knew what was going on with my health. I never kept anything from them. They were always involved in some capacity or another. You might remember my oldest daughter designed the lungs for the purple T-shirt. My husband has always been a great support. We always attend all the conferences together. It was just something that they were also passionate about, to support me. So if I was involved with the association, they were also going to be involved in some capacity.
Going forward with the organization, I hope that the next 15 years will be equally as exciting. There’s always a big focus on research. Patients, always, their first thing that they hope what PHA Canada can do more of is research. We’ve awarded our 15th research scholarship, bringing the total to 150,000. That’s great for our country. It is always something that patients want, so we’re happy that we can do that. I hope that more meds will become available, more approved therapies and treatments; and that it will be easier to access the medication and not have to be so difficult to get public funding for medication.
As you know, the entry fee to PHA Canada’s conference is always free. We have something very exciting during the conference this year. We will be honoring two Eternal PHriends. An Eternal PHriend is a friend of the organization, a perpetual friend, who we honor and celebrate for having done various things for the association; for having contributed in some capacity, who we just want to honor and celebrate. Saying thank you for being there, for us throughout your entire involvement with PHA Canada.
I hope to see you all there in person, on June 9th and 10th, in Ottawa. If you can’t make it, we know that sometimes some people can’t make the trip, some parts of the conference will be live-streamed and translated, as well, for our French community.
My name is Nicole Dempsey, and I’m aware that I’m rare.
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