The CONNECT Collaborator Series is an interview series where we host conversations with healthcare professionals and partners with the goal of encouraging deeper collaboration in the healthcare industry.
Watch the full CONNECT Collaborator Series video featuring our Co-Founder, Lorie Spence, and Leanne Mielczarek, CEO of Lupus Canada.
Lorie Spence: Welcome to the CONNECT Collaborator interview series, where we host 10 minute conversations with healthcare professionals and partners with the goal of encouraging deeper collaboration in the healthcare industry. Today’s guest is Leanne Mielczarek, Chief Executive Officer at Lupus Canada. Leanne joined Lupus Canada in 2008 and over the years, she has demonstrated exceptional leadership and expertise in various capacities. In 2016 she was appointed Executive Director, and most recently, took the role of Chief Executive Officer. Throughout her tenure, Leanne has been a pivotal figure in the organization, consistently showcasing her dedication and strong leadership abilities as CEO, Leanne provides strategic direction and oversight for Lupus Canada’s operations, ensuring the organization’s continued success across all areas, including community engagement, fundraising, research, and advocacy. She is deeply committed to raising awareness of lupus and ensuring that individuals living with the condition have equitable access to care and treatment. Welcome Leanne and thank you for joining us.
Leanne Mielczarek: Hi, Lori, thanks so much for having me
Lorie Spence: Excellent. Well, maybe you could just tell us a little bit about Lupus Canada’s core mission and pillars that really guide the work you’re doing.
Leanne Mielczarek: So Lupus Canada, we’re the only national organization in Canada that’s dedicated to improving the lives of those affected by lupus through research, awareness, advocacy and education. We are a very small staff of four governed by a volunteer board of directors of varying skill sets. Our current priorities are to advocate for equitable access to care and treatment and for specific lupus research funding.
Lorie Spence: Well, maybe speaking around the advocating for equitable access to care and funding, you could tell us, what does that really mean? And what does equitable access to care mean, and why is Lupus Canada so dedicated to this?
Leanne Mielczarek: We want to ensure that Canadians living with lupus receive the care and treatment they deserve, regardless of who they are or where they reside. Lupus, as some may know, affects 1000s of Canadians. It could be men, women or children, and it is extremely difficult to diagnose. Can take up to seven years. There’s no singular or definitive test for lupus, and many patients experience delays in this diagnosis, which, as you can imagine, have quite the impact on their overall health, their organs and such. We say diagnosing lupus is like putting a piece of a puzzle together, and even though, with significant advancements in lupus treatments, we still face the challenge that there is not fast enough diagnosis, there’s limited treatment and very limited funding allocated to lupus specific studies. And we are committed to advocating for the increased investment in funding for lupus specific research. We continue to collaborate with policy makers, healthcare providers and other patient organizations, and we continue to educate folks to understand their entitlements to their legal rights around lupus. So when we talk about equitable access to care, we want to ensure that the patients themselves in Canada have the same level of care that they deserve and that they have the access to treatments. As we see in the lupus space, there’s not a lot of lupus specific treatment. We’ve seen two new biologics in the last year or so, one being Benlysta, and the other, Saphnelo. There’s more that’s needed, because it’s an extremely diverse disease. So we want to make sure that someone living with lupus has access to any and all treatments that are available, and care. And have access to rheumatologists and different healthcare providers.
Lorie Spence: I think that’s really interesting, and I think probably not everyone who’s aware of the complexity, as you mentioned up front of both the diagnoses. But then obviously care, and when you were speaking of treatments, I think it’s also important because of the complexity and diversity of the disease. You might want to help us understand a little bit more why there’s this need for diverse treatment as well.
Leanne Mielczarek: Well, with lupus being such a diverse disease, and when we talk about that, what we’re saying is it can impact one person very differently than it impacts another. Someone may have heart involvement, some may have kidney, some may have skin. There’s what we call a brain fog, there’s extreme fatigue and the list of symptoms can go on and on. Therefore, how it affects one person can differ from another. Therefore it can’t be a one size fits all treatment plan. So we really have to look at the individual, and they have to work with their healthcare team to ensure that they are being given the best care and the best form of treatment that’s going to help them. Because it does affect everybody so differently. Which leads us to, again, we need more research to look at the diversity of populations and how certain populations are disproportionately affected, we need to expand treatment options. As I mentioned, there’s only two specific lupus treatments right now, and the first one didn’t come about until 2011 and so a lot of folks are on corticosteroids. And as you can imagine, that is very damaging to their organs and such. So we really want to limit and reduce and hopefully see people get off of corticosteroids. And we also want to have further access to clinical trials, which then also supports the need for further research. I think
Lorie Spence: I think one of the things too, with this heterogeneity of disease for lupus, obviously, the healthcare provider is very important. And maybe you can tell us a little bit about what Lupus Canada is doing to support awareness and education amongst healthcare providers and patients when it comes to help to understanding lupus.
Leanne Mielczarek: The lupus community is a really fantastic community, and we work very closely with a number of rheumatologists and other specialists that are involved in lupus patients care. And how we collaborate with them is we want to make sure that the patient’s voices are heard and their needs are addressed. So we really need to look at that from not only the patient’s perspective, but also from the health care providers perspective, so that we’re seeing the whole picture. And how can we as a patient organization, better support them. One way in which we’re doing that right now is we have informational cards, which we’re making available to healthcare professionals in their clinics and their offices and wherever, so that they can then provide these to the patients, because their time with the patient is usually quite limited, sometimes 15 minutes. So, when someone’s not seeing the rheumatologist that often, that time is very precious. So, we want to make sure that they can hand them this information, they know to go to Lupus Canada’s website, we’re a vetted website. We have a resource hub, and they can find out the information they need to find out, and they can reach out to us as well. So, we also run community forums, webinars, and many other programs in which to help not only the lupus patient, but also the caregivers and families.
Lorie Spence: And as we’re entering May, it’s Lupus Awareness Month. Maybe you can tell us a little bit about the exciting initiatives that Lupus Canada has planned, and specifically, I think we were looking forward to what you have for your Lupus 1000 challenge.
Leanne Mielczarek: I’m really happy to share with you all the incredible initiatives that are taking place during Lupus Awareness Month in May. We have the Lupus 1000 challenge, as you mentioned, and that runs from May 1st to May 10th. And this is where folks can set their own goals, and we’re asking them to complete 1000 of anything. Could be, steps, laps, jumps, whatever that may be, and it’ll help raise funds and awareness for lupus research. Our overall goal is to raise $10,000. This is new for Lupus Canada. This is a new initiative, so we’re pretty excited. We already see, I think, think we have six or seven teams already registered. I am registered, and I am going to walk 1000 stairs or steps. I counted them out in my house, and that is my goal. So I’m excited about that, and I already have people supporting me, so it’s wonderful. And we also have Classrooms For a Cause. This is the second year of this program, we’re empowering students to raise awareness through creativity, through art. So classrooms across Canada will engage students and teachers to learn more about lupus, to have those discussions in the classrooms and raise awareness. And what they do is they can create butterflies, whether they paint them, they draw them. We had so many fantastic pieces submitted to us last year, from, you know, daycare level through to grade 7, and just fantastic. We saw the butterflies displayed in clinics, we saw them displayed in schools. And it really just helps folks to better understand a little bit more about lupus and for at that age level as well, because we do see young folks living with lupus. In one school, as a matter of fact, they really helped this one child to be able to talk to his friends about what is lupus. We also provide them with age appropriate material that they can discuss within the classroom, and they can take home to their families. And there is a couple of awards that are given for that so that we’re giving back to the classrooms. Also new this year is the Patient Choice Award for Canadian Rheumatologist of The Year. It’s to recognize the exceptional work that rheumatologists are doing. We’re always hearing about, you know, there’s not enough rheumatologists, and I don’t see them enough, and you know, but we want to really draw on the great work that they’re doing. And so patients are invited to nominate their rheumatologist. And we’re excited to see where that comes out. The other thing that we’re doing is Canada will illuminate in purple for May 10th. Different landmarks across Canada. I think we usually have around 70 landmarks that you can see from coast to coast, and you can go to our website to see where those are, and they can take photos and send them in. We also have a number of provinces and cities that are declaring May 10th World Lupus Day, so they’ve made declarations, proclamations. So again, you can find out lots more information about Lupus Awareness Month and all the activities that we’re doing on our website. And as well, you can find out about all the work we’re doing and look at our resource hub, should you be living with lupus, you’re newly diagnosed, you think you have lupus, you’re a caregiver of someone with lupus, even physicians, can go to our website, and there’s lots of valuable information there.
Lorie Spence: Great. So maybe you can share your website and where else people can find information, Leanne.
Leanne Mielczarek: Absolutely. So our website is lupuscanada.org and we also are on all the social media channels. So please follow us, Lupus Canada on Instagram, Facebook, LinkedIn, X and all of them, they’re out there, I think YouTube and oh my goodness, there’s so many. We have a great staff that takes care of that, but we are constantly posting, especially throughout this month. There’s just so much going on. So please follow us on social media to learn more about all the wonderful activities that we’re doing.
Lorie Spence: Well, congratulations on kicking off Lupus Awareness Month, and thank you very much for joining us today. We look forward to continuing to follow your journey and seeing how you make out on your 1000 Challenge.
Leanne Mielczarek: Thank you. I appreciate that, and thank you for the time. It’s wonderful. And we look forward to hearing from folks.
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