Who We Are
Message from the CEO and Chair
PUSHING BOUNDARIES
The last decade has been marked by a series of extraordinary research breakthroughs that have greatly advanced our understanding of how to diagnose and treat multiple sclerosis (MS). Advances for repair and prevention once considered a distant hope for the future are turning into a reality for the over 90,000 Canadians living with and affected by this disease.
MS Canada is committed to changing the face of MS today – and tomorrow. We’re making incredible advancements towards our Impact Goals of advance treatment and care, enhance well-being, understand and halt disease progression, and prevent MS.
The incredible progress we’ve seen towards these goals is a result of the outstanding MS research enterprise right here in Canada. MS Canada has cultivated a network of world-class, internationally recognized MS researchers, and has become a leading contributor to discovery in the field of MS. We’ve seen incredible improvements in health outcomes and quality of life for people diagnosed with MS with decreased mortality and delay of disability as a result of significant progress in treatments and care. While the improved health outcomes are substantial, we’re also continuing to invest in research focused on understanding the causes and mechanisms of disease progression in MS, and on protecting, repairing, and regenerating nerve cells targeted by MS.
When it comes to MS – time matters. We know that early detection and early intervention are fundamentally key to preserving brain health and can potentially alter the disease’s outcome completely. We’re seeing more emerging research on the existence of an MS prodrome – the early signs of a disease five to ten years before the onset of first symptoms – that provides a window of opportunity for early intervention.
At MS Canada, we recognize and value the power of collaboration. The experience and expertise within the MS community in every part of Canada and around the globe working together will lead to transformational progress. We’re forging partnerships with global MS organizations and research experts who share our commitment to achieving our vision of a world free of MS.
The MS community is at the heart of everything we do –it is dynamic and determined, made of people who are committed to improving the quality of life for Canadians living with or affected by MS. We know that MS is a disease that is complex and individual; it is as diverse as the community it affects. We are empowering our community to think outside the box that has traditionally defined MS, to push the boundaries and to expand our view of this disease beyond what we ever thought was possible.
We’re incredibly encouraged by the strides that have been made in recent years. Yet the urgency remains. We need to find answers to the most pertinent challenges faced by people living with MS today. We’re immensely grateful for the many people within the MS community dedicating their time, talents and funds towards our mission. Together, we’re transforming lives and fostering a brighter future for all.
|
Dr. Pamela Valentine CEO, MS Canada |
Susan Senecal Board Chair, MS Canada |
Reaching our Vision
Our strategic framework, Discover. Innovate. Act. builds on the momentum of our past efforts and progress. At its core, our strategic framework is driven by a singular vision – a world free of MS.
To translate this vision into reality, we established four impact goals that embody the change we want to achieve: advance treatment and care; enhance well-being; understand and halt disease progression; and prevent MS.
This framework acts as our blueprint for the future, and a beacon of hope, forging a clear path towards a world where MS is but a memory.
Our MS Community
The collective action of our MS community – our joint dedication, perseverance, time, and resources – is what drives change, pushes boundaries, and will ultimately lead us to a world free of MS.
Who we are – understanding diversity in our community
A better understanding of the diversity of people living with MS is key to addressing health inequities, creating better personalized treatments and ultimately achieving better health outcomes for people living with MS. To date, there is little work in Canada that has characterized diversity in MS.
To address this knowledge gap, we initiated a project with Dr. Ruth Ann Marrie, who is leading the charge and driving change in the research community by developing the first guidelines on making clinical trials more diverse.
To find out more about diversity in the MS community watch Dr. Robinson and Dr. Langer-Gould.
| Watch Dr.Robinson | Watch Dr. Langer-Gould |
Expanding Community Connections
We foster opportunities for our MS community to connect, share ideas, and to create new, unexpected and lasting relationships and powerful collaborations that result in a collective and positive impact, year after year.
Volunteers
Volunteers create positive change in our community.
Each person brings a unique set of skills, experiences and passions to MS Canada, and their collective and selfless actions have a direct impact on the lives of people affected by MS.
6,031+ dedicated volunteer hours:
• 129 1:1 Peer Support volunteers
• 93 Support Group volunteer facilitators
• 13 Day on the Hill volunteers
• 494 MS Bike volunteers
• 789 MS Walk volunteers
• 7 Community Hubs across Canada
Participants
2,770 cyclists joined MS Bike totalling over 647,868 km across Canada
10,800 people came together and walked 43,200 km at our 54 MS Walks events
Donors
219,644 people donated over $22.7M to MS Canada
Researchers
76 Canadian and global research collaborations fostered through grants and awards
I say to anyone that’s thinking about forming a community hub to go for it. I have been a long-time volunteer and I have found that the experiences that I’ve had often make me feel better despite what MS might be doing to my body at that time. It gives me a sense of purpose.
Community Hub volunteer, Barrie, Ontario
The Power of Partnership
MS and its related issues are complex – we cannot achieve our mission alone. Building and working with partners helps us expand our reach, increase our influence and knowledge sharing capacity, raise MS awareness, and maximize our impact.
One of many such successful partnerships is the International Progressive MS Alliance (the Alliance). As one of six founding and managing partners in the Alliance, we work collectively across disciplines and countries, enabling bold and transformative research that would otherwise be impossible to accomplish by any one country alone. In 2023, over $4.6 million Euros ($6.8 M CAD) were invested in MS research.
Community events, creative spirit, boundless possibilities
We Challenge MS is a nationwide program that helps turn people’s ordinary hobbies into extraordinary actions. It allows our community to support MS Canada in their own way, in their own backyards, on their own schedules. We know that in the face of adversity, unity and creativity know no bounds.
6825 participants
111 third-party events
Empowering our MS Research Community
We prioritize empowering our MS research community, investing in both emerging and seasoned talent to foster expertise, passion and progress. We are strategic in our support, giving them the tools to confidently tackle the most complex questions about MS and drive life-changing discoveries. Together, we amplify their impact, helping to share the most up-to-date knowledge and information with other MS researchers and across other disciplines, with health providers, and people living with MS.
In 2023, we invested $5.7 million to support 315 researchers through 68 grants across all our impact goals and research areas.
$954,449
invested in
18 research grants
to advance treatment and care
$933,819
invested in
4 research grants
to enhance well-being
$3.2 million
invested in
38 research grants
to understand and halt
disease progression
$647,243
invested in
8 research grants
to prevent MS
We currently support 118 active research grants totaling over $35 million. Since 1948, MS Canada has invested $218 million total in research.
Fostering Research Capacity
Our training and funding opportunities attract and retain outstanding talent, creating strong, collaborative networks of researchers to advance our existing knowledge of MS. In 2023 we engaged with over 1200 people in our MS community through training and events to foster and enhance research capacity across the country.
We have partnered with organizations like the Fonds de Recherche du Québec (FRQS) to co-fund PhD and post-doctoral students. This year we partnered with the Stem Cell Network to amplify our investments in the next generation of scientists and expand MS research into new areas. Dr. Elisabet Jakova was awarded the first Postdoctoral Fellowship in Regenerative Medicine for MS to evaluate the potential of neuregulin-1 to prevent disease progression and support tissue repair in progressive MS –a form of MS that has few treatment options.
Partnerships like these expand on the successes of our foundational investment in the endMS National Training Program, which creates opportunities for trainees in MS research, enhancing knowledge and skills, fostering multidisciplinary collaboration, encouraging valuable long-term peer relationships and a commitment to the MS research field.
Paying it Forward
Many of our past trainees have become established MS researchers, and now give back to the endMS National Training program as mentors
I participated in SPRINT and endMS Summer School as a trainee in 2014, and it was a fantastic experience that had such a positive impact on my professional development. I was exposed to different disciplinary knowledge bases, learned new research skills, and developed relationships and collaborations that are still in existence to date.
Being a mentor has provided an opportunity to collaborate with three excellent trainees in fields that are completely different from my own and contribute to their learning. I think this is a great way to ensure continuity in MS research in Canada.
Dr. Afolasade Fakolade, Queen’s University, Ontario
Advancing Knowledge
Sharing the outstanding, innovative results of Canadian MS researchers is vital to both the scientific community and to people affected by and living with MS.
That’s why we invest in conferences, collaborations and partnerships - together, we’re not just advancing MS research, we’re empowering people living with MS with access to the latest treatments, support and resources they need to thrive.
A trusted, single source of information to help navigate the MS journey
The Knowledge Network (KN) provides people affected by and living with MS with the most up-to-date, relevant and reliable MS information about research, programs and services to help them make informed choices about navigating their own personal journey with MS.
[The Navigator] probably detected I was in distress when I called for help. She definitely diffused an uncharacteristically high degree of anxiety and frustration I felt. She was a great listener, and obviously versed in resources I may never have found myself, yet she was careful to ensure she sent only verified info.
KN user
Translation, collaboration, connection
As the largest MS conference in the country, endMS gathers Canadian MS researchers from many different fields to create a synergy of ideas, connect with collaborators, spark new partnerships, and provides a platform to translate research into application and action.
327 attendees
123 trainees
45 speakers
I think where it starts is really giving the trainee the opportunity to feel like they have something to provide. 
Just like the saying goes ‘it takes a community to raise a child’ I think it also takes a community to train a graduate student. This community has been foundational in giving me the confidence to take risks academically, scientifically, and professionally. And that’s felt at this conference.
Adam Groh, trainee (McGill University
International recognition of Canadian research excellence and innovation
Canada continues to shine in terms of international recognition of its robust MS research enterprise – Canadian researchers received one of six International Progressive Alliance Challenges in Progressive MS awards and two of the nine Innovations in Well-Being awards. This kind of world-wide recognition exemplifies how our investment in Canadian researchers elevates their voices and enables them to reach international competitiveness, driving our mission forward on a global scale.
Ruth Ann Marrie, MD, PhD, University of Manitoba, was recognized this year as the recipient of one of the most prestigious international research awards, the Barancik Prize for Innovation in MS Research. Dr. Marrie asks research questions that are key to improving people’s quality of life and providing answers that will increase our ability to not only stop but prevent MS in the future.
Dr. Lara Pilutti, PhD, is a researcher that literally ‘walks the talk’ in our community. In addition to being an Assistant Professor at the University of Ottawa (U of O), whose research focuses on the role of exercise in the management and treatment of disability, Dr. Pilutti and her team participate every year in MS Walk. Dr. Pilutti and her multidisciplinary team also received one of the nine international Innovations in Well-Being awards in 2023. She runs and hosts CanDoMS webinars at the Clinical Exercise Physiology Lab at the U of O, co-chaired the endMS 2023 conference, has hosted EndMS Summer School, and acted as a Mentor in our SPRINT program.
Our Impact Goals
Our Impact Goals
Advance Treatment and Care
Having access to a variety of effective treatment and care options for symptom management, wellness and self-care will help people on their unique MS journey.
Advance Treatment and Care
Having access to a variety of effective treatment and care options for symptom management, wellness and self-care will help people on their unique MS journey.
Crossing the barrier to target chronic inflammation
Chronic inflammation within the central nervous system, typical in latestage MS, is hard to treat because drugs must cross the blood-brain barrier. Four late-stage clinical trials are testing exciting new therapies called Bruton’s tyrosine kinase (BTK) inhibitors that can cross that barrier. These molecules show great potential in reducing chronic inflammation while accelerating remyelination.
Stem cell therapy shows promise
An international research team completed the first neural stem cell transplantation in humans for the treatment of secondary progressive MS, showing that the treatment is safe and stabilized disease progression. The results from this small study are positive for future stem cell and regenerative medicine treatments in MS, and pave the way for future clinical trials with larger numbers of participants and controls to assess the efficacy of this treatment.
A new way of thinking about MS
Advances in science are changing how we understand MS and how it progresses. The New MS Framework uses the latest MS research findings to reframe how we look at the clinical expression of MS and recognizes the continuum of how individuals experience MS. Researchers and clinicians can use this framework to help accelerate and better design clinical trials for new treatments, and to provide personalized treatment plans for people living with MS.
A wellness approach to living with MS
There is increasing recognition of the importance of a holistic approach to managing MS symptoms. Mounting scientific evidence from high quality clinical trials continues to show the positive effects of certain lifestyle choices and activities.
For example, several recent studies and literature reviews have focussed on the safety and efficacy of main-stream diets for people living with MS. Following the Mediterranean (MIND) diet (and Mediterranean-like diets) is associated with lower levels of disability, inflammation, relapse rate, and symptoms including fatigue and cognition, while the intermittent calorie restricted diet has been shown to improve inflammation and cognitive function.
Another large multicentre, international clinical trial called CogEx found that interventions like cognitive rehabilitation and aerobic exercise can improve cognition in people with progressive MS.
QuoteYou have truly made a difference in my life, and I am extremely grateful. It is a huge source of comfort knowing that MS Canada is working hard on behalf of people affected by MS.
QuoteVery thankful for this group. Ability to meet, socialize and speak with others going though MS has been a god-send in dealing with my mental state.
QuoteWas very informative and a great introduction into the help and support that is available for people living with MS. Thank you!
20,000+ people affected by MS benefitted from our programs
 | 700+ people gained or maintained their independence through our Quality-of-Life Program |
 | 2,500+ people with MS participated in our rehab-assisted physical activity |
 | 2,000+ people attended one of our 42 education sessions |
 | 10,500+ people received support from the Knowledge Network |
 | 2,800+ people affected by MS engaged with our peer supports |
 | 1,000+ 'newly diagnosed' kits were made available |
 | 950+ people affected by MS participated in our yoga and strength training programs |
Enhance Well-being
We remove physical and social barriers to full participation in life for all persons affected by MS.
MS creates significant financial burdens on people, families, and society at large, leading to dependency on disability support and strains on living expenses.
Amidst a national affordability crisis, Canadians with disabilities, including MS, experience twice the likelihood of living in poverty compared to people without disabilities. Unfortunately, lower socioeconomic status correlates with worse health outcomes and increased mortality risk within the MS community, exacerbating the burden of the disease.
Armed with this knowledge, we continue to push forward in our collective advocacy efforts with all levels of government in Canada to increase funding supports to keep pace with the cost of living, invest in research to prevent MS, provide easier and more timely access to treatments, and to increase the number of MS specialists and allied care providers.
CanProCo
The Canadian Prospective Cohort Study to Understand Progression in Multiple Sclerosis (CanProCo), is an ongoing and unprecedented large-scale study. Early results have shown the direct costs of MS to our health care system can be reduced by increasing the accessibility of DMTs, which would in turn decrease costly hospitalizations.
The data also demonstrate an association between increased levels of disability and fatigue with an increase in unemployment and productivity loss, supporting survey data that show a staggering 60% of people with MS eventually reach unemployment.
Making our collective voices heard
Our MS community works tirelessly to advocate for those affected by and living with MS. It requires many voices and a commitment to the time it takes to effect change.
The passing of the Canadian Disability Act into law (including the definition of episodic disability) was a significant milestone this year. Our MS community advocated tirelessly for this law, and together we will continue to advocate for benefit funding that will help lift people living with MS out of poverty.
A summary of the social and economic impacts on people living with MS were highlighted in a recent report published by Deloitte Access. The report indicated that the cost of MS in Canada was $3.4 billion in 2019, and that delays in diagnosis and treatment due to the pandemic resulted in more rapid disease progression and accumulation of disability. This in turn will generate $578.2 million in additional MS-related health system expenditures, productivity losses, and lost well-being between 2020 and 2024. Information like this is helpful in demonstrating the long-term and system-wide effects of a lack of funding for this kind of care and provides us with tangible data for our conversations with government representatives.
At an international level, we worked with other global organizations to have MS medications added to the WHO (World Health Organization) list of essential drugs. There are still large inequities in the availability of these drugs, both around the world and here at home.
39,373 MS advocates
strengthening our
collective voice
127 actions by 49 MS ambassadors
showed leadership in raising
awareness and advocating for
people with MS
80 government meetings
held during Day on the Hill,
where volunteers shared their
stories to make an impact and
advocate for MS
23,191 letters sent
to elected officials
Understand and Halt Disease Progression
Understanding the complexities of MS progression will stop MS in its tracks.
Our MS community continuously works to advance our understanding of the complexity of the biological mechanisms of progression, and to further develop novel treatments to stop that progression. New research is pushing beyond pharmaceutical treatments, looking at different approaches to improve wellness and symptom management, and finding ways to repair the damage already done by MS. This three-pronged approach is leading to a series of major breakthroughs in how to halt the progression of MS, treat symptoms, and promote remyelination.
Halting disease progression
Dr. Jen Gommerman is one of a small number of researchers awarded larger and longer-term funding from the International Progressive Alliance to continue her previously funded pilot project. The funding will help build upon this incredibly successful work to find new candidate therapeutic targets to address inflammation and cognitive decline.
Genetic targeting - another path to halting MS progression?
MS involves a complex genetic profile with over 200 genetic variants linked to its risk, but none previously connected to its progression – until now. Researchers have identified a genetic variant associated with earlier disability progression. These findings open new avenues for treatments aimed at slowing or halting disease progression.
A wellness approach to symptom management
A world-wide call for research proposals aimed at enhancing the well-being of people living with progressive MS by addressing their top five worst symptoms – pain, mobility, impaired cognition, and fatigue – yielded over 50 applicants from 11 countries. Nine Innovations in Wellbeing Awards have been granted based on their potential to advance effective symptomatic treatments into the MS community. Two of these awards are Canadian-led and focused on cognition and motor function.
On the cusp of finding therapies to repair and regenerate myelin
Therapies targeting repair and regeneration of myelin (the protective coating that surrounds nerve fibers) would lead to a world where people living with MS would have the opportunity to regain function.
Exciting results from multiple early trials using different approaches, including a novel molecule called fractalkine and an oral antihistamine called clemastine, show that these therapies have the ability to repair myelin.
Another promising, non-invasive approach to promote repair and remyelination is a nondrug- based treatment called acute intermittent hypoxia (AIH), which involves exposure to short periods of reduced oxygen.
Prevent MS
Stopping MS before it starts will reduce the number of people who develop the disease.
In the not-so-distant past, the prevention of MS was seen as a distant and future hope. But in light of recent research investigating the possible role of the Epstein-Barr Virus (EBV) and other risk factors as early triggers for the onset of the disease, suddenly a world without MS doesn’t seem so unimaginable. We are on the cusp of finding answers, and we are investing more in MS prevention research to push the boundaries and keep the momentum going. Here are some of the key approaches researchers are taking in the quest to prevent MS.
More evidence for the benefits of early treatment
A new study shows that treatment of people who have radiologically isolated syndrome (RIS)* with a disease modifying therapy (DMT) leads to a significant reduction in the development of MS. This adds more evidence that early intervention, with the help of identifying risk factors and the MS prodrome (a phase where there is underlying MS pathology, without MS symptoms or diagnosis), may be an effective way to prevent MS.
A better understanding of EBV
More studies are underway to further understand how EBV works to increase the risk of MS, and how long it takes for MS to begin after getting infectious mononucleosis (the infection caused by EBV). Findings from these studies will be important for developing diagnostic and therapeutic strategies (e.g., a vaccine against EBV) to prevent MS.
One more piece to the MS prodrome puzzle
Advances in identifying the signs and features of the MS prodrome based on individuals’ health system use will allow for better screening and early intervention prior to the onset of MS symptoms. This year, new insights into the prodrome’s symptoms, including psychiatric and gastrointestinal conditions, have further clarified this crucial phase.
Thank you for your support – our MS Heroes
Every action, every dollar, makes a difference.
There are never enough words to express our gratitude for the dedication, perseverance and generosity of our community. Our community members find many ways to give their time and to raise the funds we need to support our research and programs. No act or dollar raised is too small. It is the accumulation of all these efforts that leads to big results and inspires others to join in our journey towards a world free of MS.
20,395 people joined our fundraising events and collectively raised a total of $11,157,520
55% of our donors have been with us for 8+ years
219,644 people generously donated a total of $22,703,622
Gifts under $20 raised $921,060
2,000+ people volunteered their time and energy to: Deliver 16 essential programs for people affected by MS Enable our 65 fundraising events across the country
With sheer passion and relentless commitment to the cause, Barry Travnicek has officially reached his lifetime goal of raising an astounding $1,000,000 to fight MS! Rain or shine, Barry has ridden in every single Grand Bend to London MS Bike event and, for the last 15 years, he has devoted his Friday nights to hosting a 50/50 raffle at a local bar, fostering community engagement and raising both awareness and funds for MS. Barry’s spirit exemplifies the power of one person’s resolve to make a difference and the power of community support in achieving positive change.
Canada is proud to have two of the three top fundraisers globally in this year’s May 50K. Roberte Saulnier secured the top spot with an impressive $14,511, while Susan Page claimed third with $11,255. What started as a friendly competition between these two women from different parts of the country quickly turned to friendship, and in 2024, they will again join forces to raise funds and awareness for MS.
Twice annually, the gaming community unites in a powerful display of comradery, solidarity and meaningful action, streaming their passion into support for Canadians living with MS. In 2023, Gamers vs. MS shattered expectations, leading a one-week, non-stop streaming relay in April, followed by the “Boss Battle” tournament, raising over $71,000 to drive towards a world free of MS.
Jonathan Allenger and Andrew Merriam have each cycled across the country to raise awareness and funds for MS. Each of them is motivated for different personal reasons – Jonathan is living with MS, while Andrew’s dad and best friend are living with MS. Although each of them has approached their rides and fundraising differently, the common denominator is their resilience, courage, determination, and dedication, which is truly inspirational. Over the past 10 years, Jonathan has completed 21 bike events across Ontario and in several US States, raising over $250,000 collectively. Andrew has travelled 6,600 kilometers across Canada, raising $7,700; he’ll add that to the $30,000 he has raised for MS research through previous initiatives.
I think that if you have an idea, you should just put your mind to it and put your best foot forward. I’m a perfect example. I’m not a super cyclist, but I’m engaged and making it happen! Am I going to set a land speed record? Absolutely not. But I will complete it. Life is short; be the change. Start a conversation. It all matters.
Andrew Merriam
Financials
Of the $46,105,943 ($42,391,329 raised and $3,714,614 drawn from reserves) spent in 2023:
$22,688,133 (49%)
funded life-saving research, programs, and advocacy
$18,999,695 (41%)
was invested in community fundraising activities
$4,418,115 (10%)
went towards administration
* Radiologically isolated syndrome (RIS) describes a situation where a person without typical MS symptoms has a magnetic resonance imaging (MRI) scan of their brain, revealing the characteristic lesions seen in people with MS.
Our MS Community
The collective action of our MS community – our joint dedication,
perseverance, time, and resources – is what drives change, pushes
boundaries, and will ultimately lead us to a world free of MS.
Who we are – understanding
diversity in our community
A better understanding of the diversity of people
living with MS is key to addressing health
inequities, creating better personalized
treatments and ultimately achieving better
health outcomes for people living with MS.
To date, there is little work in Canada that
has characterized diversity in MS.
To address this knowledge gap, we initiated
a project with Dr. Ruth Ann Marrie, who is
leading the charge and driving change in the
research community by developing the first
guidelines on making clinical trials more diverse.
To find out more about diversity in the
MS community watch Dr. Robinson
and Dr. Langer-Gould