For Aprile Royal, multiple sclerosis education has been her life’s work for more than 40 years, describing her storied career as “a dream come true.”
Since returning to St. Michael’s Hospital and the BARLO MS Centre in March 2023, Aprile has served as Education Program Manager, where she has led patient and staff learning. In this role, Aprile has been a beloved fixture at BARLO, helping newly diagnosed patients understand MS, navigate treatment decisions, and feel less alone as they begin their journey.
As she reflects on more than four decades in MS education, she shares how she came to work in this field, how patient care has changed, and why kindness remains at the heart of her work.
What first drew you to the field of multiple sclerosis?
I started working in the MS clinic at St. Michael’s in 1982. A wonderful doctor named Dr. Trevor Gray, who had started the MS clinic, was looking for help with a research project—the first big collaborative Canadian clinical trial in MS. I jumped into that work and fell in love with everything: the patients and the field.
At that time, we had no treatments and when people came to us, we supported them as best we could. We could help with symptoms, and we could provide care and reassurance, but we couldn’t do anything to change the course of the disease. What Dr. Gray taught me was that, even when you don’t have all the answers, caring can do so much. Kindness, education, and support can make an enormous difference in someone’s life.
How did your nursing background shape the way you approached MS care?
Before working in MS, I had worked in other nursing roles, including the burn unit at SickKids and the neurosurgical intensive care unit at St. Michael’s. Those were acute care settings, where nurses are often very much in control of what is happening in the moment. What I loved about MS was different. It was about relationships over time. Patients would come in, call with questions, return for follow-up and continue building a relationship with the clinic. To me, it was the perfect nursing job.
In MS, the work is about enabling people to live their best lives through education, support and ongoing care.
How has the field of MS changed since you first began?
The amount of knowledge we have gained in a relatively short time is astounding. When I started, we had no treatments for MS. Today, not only has the science advanced so dramatically, but treatments that we never imagined could exist now continue to become more effective. That is life-changing for patients.
These days, we simply do not see the same level of disability that we used to see. MS often starts when people are young adults, and it used to be inevitable that, over time, most people would experience significant decline. That is no longer the case for patients. People are getting treatment early, and years later, the vast majority are still doing very well.
I remember early in my career, I would sit with newly diagnosed patients in my office, holding their hands, trying to comfort tears, and saying, “Someday, we’re going to have something to treat this.” And now we do. What a privilege that is.
What does your role at the BARLO MS Centre look like each day?
It’s a mix of many different things, which is part of what I love about it. I spend time keeping our website up to date and looking for new ways to make it useful and engaging. I like to include video clips and different kinds of content, so patients can access information in ways that feel approachable and accessible. I run education programs for newly diagnosed patients, webinars that are open to patients and supporters, and Lunch and Learn sessions for BARLO staff. I take suggestions from patients, nurses, and other team members about what people want or need to know more about and create education content around those needs.
What are some of the most common questions or concerns you hear from newly diagnosed patients?
A major concern is treatment. Many people are understandably afraid of starting a medication they may need to take long term. There can be a lot of mistrust or anxiety around medication, and that is completely understandable. One of the advantages of being at a centre like BARLO is that we treat thousands of people with MS. We have deep experience with how these therapies work, and we can reassure patients that there are choices. If one therapy is not the right fit, there are other options. Patients also ask about symptoms, especially fatigue, which can be very troubling. They ask how MS will affect their lives, their families, their children and their future. I try to answer with warmth, experience and as much data as possible. Data can be very reassuring for people, because it shows them that large numbers of people with MS are doing well.
What makes the education programs at BARLO so unique?
In Canada, there really is nothing else quite like the education programs we have at BARLO. The Newly Diagnosed Patient Education Program, in particular, gives people a structured opportunity to learn, ask questions, connect with others, and begin building relationships with us. Part of our role is also to share knowledge beyond our own walls. Recently, the London MS Clinic invited me to present our program so they could explore offering something similar to their patients. I have also shared the presentation with MS nurses across Canada, so other clinics can use it as a resource.
What was it like to build the Newly Diagnosed Patient Education Program at BARLO?
At first, it was overwhelming. One of the first priorities was creating the website, and I would not describe myself as a tech person. But I knew the content. I knew what patients needed to understand and what questions they were asking.
A lot of the first year was dedicated to developing that resource. There was lots of patient consultation, asking them to review content and share what else they wanted to see. That feedback has been ongoing, and we continue to listen to patients and staff, and update the program based on what people tell us they need.
How do you know the program is making a difference for patients and families?
After every program, we ask participants to complete an evaluation. We use that feedback to keep improving. Recently, I presented a poster at an international multidisciplinary MS meeting that looked at whether our program is meeting the objectives we set out to achieve. We found that we are meeting our objectives at very high levels, in many areas, around 98 per cent.
One of the most important goals for me was reducing anxiety. We are meeting that objective at about 85 per cent, which is so incredibly meaningful to me. If people can leave a session feeling a little more relaxed, a little more prepared, and a little less alone, that means everything.
What have patients taught you about what they need most?
Patients have taught me everything. They have taught me that people need kindness, someone to listen, a sense of understanding, and reassurance. That may sound simple, but a little warmth can make a tremendous difference. And I have to say, patients look after me too. They notice. They ask how I am. They give back to me in ways they may not even realize. My whole career has been shaped by what patients have given me.
What makes BARLO such a special community?
The calibre of the team is extraordinary, with clinician-researchers who are caring for patients while also advancing truly cutting-edge research.
The physical space matters, too. BARLO is calm, bright, and welcoming. Our large windows offer an immediate connection to the outside world. It’s hard to overstate how much that has a real impact on how patients feel when they come in. When I started in the MS clinic years ago, we had two exam rooms that were essentially repurposed broom closets, with hooks still on the walls. Seeing what exists now is remarkable.
Beyond the space and expertise, BARLO has the resources to support patients in ways that go beyond a medical appointment. We’ve got the Newly Diagnosed Patient Education Program, webinars, staff learning, and so much more to help people understand MS feel supported and face the road ahead with confidence.
What does donor support make possible at BARLO?
Donor support makes this work possible. In a healthcare system where resources are incredibly limited, philanthropy creates space for education, connection, and support that would otherwise be very difficult to provide.
I would not be in this role without our donors. Our donors helped bring BARLO’s education program to life because they understood how much patients need information, reassurance and support, especially at the beginning of their MS journey. Such extraordinary support makes this whole world possible: the education, the connection, the reassurance, and the human layer of care that we bring at BARLO.
What has it meant to you personally to be part of BARLO?
For me, coming back to St. Michael’s and BARLO felt like coming home. I did my nursing training at St. Michael’s, and this is where I first began my career in MS. Over the years, I’ve worked in different parts of the MS community: in clinical care, pharmaceutical MS education and at MS Canada. But St. Mike’s has been the most meaningful to me. There is an intimacy here that is very special.
And for me, the greatest source of inspiration continues to be the faces I see every time I lead a session: the people in the room who are just beginning their journey with MS. I only hope I can help them begin that journey in a positive way. That still inspires me.
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