Progressive MS research is advancing through global collaboration, new scientific approaches, and the commitment to improve life with MS.
In this interview, Tim Coetzee, President and CEO of the National MS Society and Chair of the International Progressive MS Alliance, explains key milestones, ongoing challenges, and the next goals in progressive MS research.
We talk about biomarkers, better clinical trials, quality of life, and why people living with progressive MS can have realistic hope for further progress.
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Personal Introduction & Why This Matters
Tim, could you briefly introduce yourself and explain your role as Chair of the International Progressive MS Alliance?
Tim Coetzee, President and CEO of the National MS Society in the U.S., and Chair of the Executive Committee for the International Progressive MS Alliance:
Everything I do is driven by one goal: ensuring that people living with MS have access to the treatments, support, and breakthroughs they need to live their best lives.
In my role as Chair of the Executive Committee of the Alliance, I work with the rest of the Executive Committee, which is made up of the leaders of each of the Managing Member Organizations of the Alliance – MS International Federation, MS Australia, MS Canada, MS Society UK, the Italian MS Society, and the National MS Society in the U.S. – to oversee the strategy and governance of the Alliance, ensuring we are doing everything we can to meet our mission: to accelerate the development of effective treatments for people affected by progressive MS to improve quality of life worldwide.
For listeners who may be hearing about the Alliance for the first time: why was it created?
Tim Coetzee: Simply put, people living with progressive MS couldn’t afford for the global research community to work in silos. Rather than competing for answers, we chose to come together to create the Alliance, and to accelerate the advancement of treatments and solutions for this group, which has had very few options.
The Alliance is an unprecedented global collaboration of MS organisations,researchers, health professionals, the pharmaceutical industry, companies,trusts, foundations, donors and people affected by progressive MS – all working together to address the unmet needs of people with progressive MS and rallying the global community to find solutions.
As I mentioned, there are six managing member organizations that lead the Alliance, supported by 13 additional MS organizations around the world from Denmark to France, from Iceland to Brazil. We are also supported by seven pharmaceutical and biopharma industry members, as well as many donors, trusts and foundations.
What was the unmet need that made a global alliance necessary, rather than many organizations working separately?
Tim Coetzee: At the time the Alliance was founded, there were several treatments available for people with what we have called relapsing-remitting MS, but there were no effective treatments for people with progressive forms of the disease.
With a challenge of such global proportions, the leaders of the managing member organizations came together to create this collaborative effort with the aim of developing new knowledge about progression and to find effective treatments. By working together and pooling the funding and research talent that exists worldwide – instead of competing or duplicating efforts – we can accomplish what no single entity could alone.
Understanding Progressive MS
When people hear “progressive MS,” they often think mainly of primary progressive MS, and maybe also of secondary progressive MS. Could you briefly explain these terms and how they differ from relapsing-remitting MS?
Tim Coetzee: The current descriptors of MS include three different types: Relapsing-Remitting, Secondary Progressive and Primary Progressive.
- Relapsing Remitting (RRMS) – The most common MS disease course. RRMS shows clearly defined attacks of new or increasing neurologic symptoms. These attacks are also called relapses. They are followed by periods of partial or complete recovery, or remission.
- Secondary Progressive – Some people diagnosed with RRMS eventually go on to have a secondary progressive MS (SPMS) course. In this course, neurologic function declines progressively and disability increases over time. Each person’s experience with SPMS is unique. In SPMS, you may have relapses, as well as periods of stability.
- Primary Progressive (PPMS) – With PPMS, neurologic function worsens or disability accumulates as soon as symptoms appear. There are no early relapses or remissions. About 15% of people with MS are diagnosed with PPMS.
As we have learned more about the disease in the past decade, it’s clear that these current descriptors don’t tell the full story of a person’s MS journey.
With the update to the McDonald Diagnostic Criteria published in 2025, MS can be diagnosed as one disease with both relapsing and progressive biological mechanisms.
With that said, most providers and patients still use the terms relapsing remitting, secondary progressive, and primary progressive to describe their disease course.
Relapse describes the appearance of defined attacks. Many people who live with relapsing MS find that their relapses can be managed by high- efficacy disease modifying therapies.
Those currently described as having “secondary progressive MS” are people who may have well-managed relapses, but still experience disability accumulation without new lesions or attacks.
Today, MS is increasingly understood as a continuum rather than as completely separate disease types. What does this mean in everyday language?
Tim Coetzee: As we have learned more about the disease in the past decade, it’s clear that these current descriptors don’t tell the full story of a person’s MS journey.
With the update to the McDonald Diagnostic Criteria published in 2025, MS can be diagnosed as one disease with both relapsing and progressive biological mechanisms. The MS research community is now acknowledging that we need to evolve from the current course descriptors toward a more biologically informed description of MS disease course.
For people living with MS, it means we increasingly understand that MS doesn’t fit neatly into separate boxes. Every person’s experience is unique, and our growing understanding of the biology behind the disease is helping us move toward more personalized approaches to care.
There is a committee made up of some of the top researchers in MS around the world working to make recommendations about changing how we describe the disease moving forward, but there is still much more work to do in order to make this shift. There are significant implications for this change as it will impact not only people with MS, but also regulators, drug development companies, insurance companies and more.
How does this newer understanding increase the urgency of the Alliance’s work on progressive MS?
Tim Coetzee: One of the gaps in our understanding of the biology of MS is still around what causes progression, making that aspect of the Alliance’s work even more urgent. The Alliance currently focuses on understanding the biological mechanisms related to progression to better address the underlying causes of their symptoms.
The Alliance: Strategy,[SS4.1] Milestones & Collaboration
What have been the most important milestones on the Alliance’s journey so far?
Tim Coetzee: Our proudest achievement is the creation of the Alliance itself – recognizing the significant unmet need for people with progressive MS, and then bringing together the world’s scientific, industry and advocacy leaders to collaborate and work toward solutions.
We are also extremely proud of the creation of our three global Collaborative Research Networks, which connect experts across disciplines and continents who otherwise may have never worked together.
The Alliance has formalized a team of people affected by MS to engage and provide perspectives on all of our work. This group has developed and implemented the Principles of Patient Engagement in MS Research – a set of guidelines that ensures the engagement of patients in all stages of the research we fund.
We have successfully created an Industry Forum within the Alliance, which brings together pharmaceutical companies in a pre-competitive manner to collaborate and advise on our research priorities. This collaboration also led to the launch of the MS Clinical and Imaging Data Resource, which provides the MS research community with access to anonymized and harmonized MRI and clinical data from thousands of people living with MS who participated in one of many clinical trials with these organizations.
To date, we have awarded more than €45 million to our collaborative research networks and other research projects, all aimed at finding solutions for progressive MS.
The Alliance focuses on understanding progression, improving clinical trials, and improving well-being. How do these priorities fit together?
Tim Coetzee: These are our three scientific priorities, and they are informed by the main challenges in progressive MS research:
- The biology of progressive disease remains poorly understood – we need this understanding in order to develop new, innovative treatments.
- Clinical trials in MS need to become more “fit for purpose” – finding new outcome measures and tools to reduce the time and cost of research.
- Quality of life for people living with progressive MS remains poorly addressed.
The Alliance aims to address all of these items, and no one is more urgent than the other. While we search for the cause, treatments, and ultimately a cure, we also need to address the challenges faced by those living with the disease today.
Who is involved in the Alliance, and why is it important to include researchers, MS organizations, industry partners, clinicians, and people affected by MS?
Tim Coetzee: In addition to the MS organizations around the globe, we engage each of these groups to ensure our work is moving in the right direction:
- Top researchers and clinicians from around the world make up our Scientific Steering Committee, which sets the scientific priorities of the Alliance and make recommendations on the types of research projects we should fund.
- The Industry Forum – made up of our industry members, is an advisory committee to the Scientific Steering Committee. They contribute knowledge on drug discovery and development – what it takes to bring treatments to market.
- Our People Affected by MS Engagement Coordination Team is made up of 10 people around the world who live with progressive MS. Their involvement ensures that our efforts are focused on the solutions that people really need. Throughout our work, their voices add value, and members of this team sit on other committees, including the Scientific Steering Committee, Industry Forum, Research Oversight committees and more.
How do the different member organizations contribute in practice?
Tim Coetzee: Managing Member organizations all contribute staff resources to different aspects of the Alliance, from their scientific staff who participate in the Scientific Steering Committee, to the Fundraising and Communications team, which ensures that people around the world are aware of and are motivated to contribute to the work we are doing.
Does the Alliance work on several research projects at the same time, or does one step need to be solved before the next can begin?
Tim Coetzee: Because we have an ambitious mission with several priorities, there are multiple projects in progress at any given time. For example, right now we are funding:
- Six projects aimed at finding new therapeutic targets for progressive MS, taking place in five different countries
- Two full-scale clinical trials, aimed at advancing the design and efficacy of clinical trials and gaining new understanding about progressive MS. We’ll be funding one more trial in this area at the end of this year.
- Three full-scale efficacy trials that are testing therapies to address the most problematic symptoms in progressive MS, including cognitive impairment, fatigue, pain and mobility – including upper limb.
- We also have three Collaborative Research Networks which are ongoing, large-scale networks that bring together leading scientists from MS research institutions from multiple countries address some of the bigger questions in progressive MS. Two are focused on drug discovery – aiming to find new treatments to repair damage or slow progression. The other is focused in using MRI biomarkers and large language models to predict future disability progression in MS.
Research Reality: Progress, Setbacks & Lessons Learned
Can you share one concrete setback in progressive MS research and what the Alliance learned from it?
Tim Coetzee: One of the biggest challenges is that we still don’t have reliable biomarkers that tell us who will progress, how quickly progression will occur, or whether a treatment is working early enough. While that is a setback, it also helps us stay focused on our efforts to more fully understand progression and progressive MS, and that we must work together with the global research community to find these answers.
How do you keep scientists, funders, and people affected by MS motivated when progress is important but often slow?
Tim Coetzee: Those of us on the research and funding side are greatly motivated by the fact that people with progressive MS need solutions. I also know that research can often feel very slow for those waiting for solutions. But every advance matters. Every study teaches us something. Every insight gets us closer to treatments that can change lives. And we do our best to keep people updated on our work, sharing the wins and the progress being made through regular updates, social media, project highlights, and through our People Affected by MS team.
How has the design of clinical trials in progressive MS already changed, and why does that matter for patients?
Tim Coetzee: A couple of examples of the ways studies have been changing include:
- The ORATORIO-HAND study – an international clinical trial involving more than 1,000 people with PPMS across 22 countries. The study found that ocrelizumab can slow overall disability progression and the worsening of hand and arm function. This study was unique in that it included older patients and those with greater disability – a group that is often not included in clinical trials.
- The Alliance’s Experimental Medicine trials initiative is focused on novel trials with the add-on effect of better understanding mechanisms present in patients experiencing progression.
What role do comorbidities — other health conditions alongside MS — play in understanding progression and designing better studies?
Tim Coetzee: Comorbidities are part of the progression story. They can be vascular, metabolic, psychiatric, or even neurologic conditions, and studies show that they are common in MS and are linked to faster disability accumulation and worse outcomes overall. They may also shape how progression happens. For example, some comorbidities increase disability worsening even without more relapses or MRI activity, suggesting they may drive the slower, underlying progression we see in progressive MS. And from a research perspective, they’re critical. People with comorbidities are often excluded from trials, but they’re the reality in the clinic. So, if we don’t measure and account for them, we risk designing studies that don’t reflect real-world MS or missing important treatment effects and safety signals. To really understand progression, we must study MS in the context of the whole person, including the other conditions that may accelerate or modify the disease.
Treatment, Rehabilitation & Daily Life
When you think about treating progressive MS, how would you weigh medication, rehabilitation, symptom management, lifestyle, and social support?
Tim Coetzee: Everyone’s experience with MS is different, but for the most part, all of these play an important role in helping a person manage their disease.
What can people with progressive MS realistically hope for today, while research continues toward better treatments?
Tim Coetzee: People living with progressive MS should know that progress is happening now – not someday in the future.
We know that quality of life and wellbeing are key priorities for those living with progressive MS. As such we have invested 8 million euros in well-being research aimed at addressing some of the most challenging symptoms of progressive MS. The studies in progress right now were chosen for funding not only because of their ability to address these symptoms, but also their likelihood of being quickly and easily implemented once they are validated.
Researchers are also working hard to find ways to slow and reverse progression, and there are promising studies in progress.
Outlook & Closing
What is the next big goal for the Alliance?
Tim Coetzee: Our work is not finished, and in fact, earlier this year, the Alliance’s Executive Committee reaffirmed its commitment to addressing the unmet needs of people affected by progressive MS worldwide, because despite the advances in treatments for other forms of MS, progression remains unsolved.
With that, we asked the Scientific Steering Committee to create task groups to identify gaps in the research within each of our scientific priority areas (understand, prevent, reverse progression; speed up clinical trials; improve well-being).
The task groups have been working on this and will be convening later this month to share their recommended priorities with the full committee for discussion and consensus, and will be making recommendations to the Executive Committee that will shape our strategy for the next several years.
Which development in MS would you like to see in the next five years?
Tim Coetzee:
- A diagnosis can be made in hours rather than weeks, months or years
- Everyone with MS has access to affordable treatments and a treatment plan tailored just for them – no matter what type of MS they have
- People with MS can count on a community in navigating the challenges of MS
- And ultimately, an MS diagnosis is nothing to fear because there’s a cure.
What would you like to leave our listeners with — especially those living with progressive MS or fearing progression?
Tim Coetzee: There is progress happening every day, and there are researchers and organizations and people all over the world working hard to find treatments and therapies. We know this work is important and we are not finished until we have solved progressive MS.
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See you soon and try to make the best out of your life,
Nele
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