The Multiple Sclerosis International Federation (MSIF) plays a vital role in uniting the global MS community to improve the lives of people affected by multiple sclerosis. In this inspiring interview, Peer Baneke, former CEO, and Lydia Makaroff, the new CEO, share their insights on past milestones, current challenges, and the future vision of MSIF. From global access to treatments, early diagnosis, and mental health support to patient-led research and digital innovation—this conversation offers valuable perspectives for anyone living with MS or working to support those who do.
👉 Take a moment to listen to the full podcast episode or read the interview highlights—whether you’re living with MS, supporting a loved one, or working in the field, there’s something here for you. Let’s stay connected, informed, and inspired—together with the global MS community. 💪🧡
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More InformationTable of Contents
Introduction & Personal Insights
Peer, you recently retired after many years at MSIF. Could you briefly introduce yourself and share a personal hobby that kept you grounded during your time as CEO?
Peer Baneke: I’m Peer Baneke, and I served as CEO of MSIF for 18 years. Before that, I worked in human rights and refugee support. MS is close to my heart—my father had MS—and I’ve lived in and around London for over 40 years. What keeps me grounded is my family and cycling. Now that I’m retired, I enjoy even more time for it.
Lydia, congratulations on your new role! Can you tell us a bit about your background and what motivates you to lead MSIF?
Lydia Makaroff: Thank you! I grew up in Australia and worked in the US, Belgium, and now here. I’ve always believed in international collaboration. My background spans science, the pharmaceutical industry, and civil society. What drives me is the opportunity MSIF has to truly create global change for people affected by MS.
The Mission of MSIF
Peer, reflecting back, what do you see as MSIF’s core mission and your biggest achievements?
Peer Baneke: MSIF’s mission is to bring the world together to improve the lives of people with MS. Key achievements include establishing the Atlas of MS, building the Progressive MS Alliance, creating a truly global World MS Day, and getting MS medications onto the WHO Essential Medicines List.
Lydia, how do you envision MSIF’s mission evolving?
Lydia Makaroff: We’ll continue building on the strong foundations Peer laid. As MS diagnoses rise globally, especially in under-resourced areas, we must ensure our tools work for everyone. We’re shifting to a more holistic approach, recognizing that MS affects all aspects of life—not just the medical.
Global Impact and Collaboration
Peer, could you highlight one or two key initiatives or projects you feel had a particularly big global impact for people living with MS?
Peer Baneke: The Atlas of MS is a cornerstone for advocacy and research. It’s used globally to influence policy. Also, our resource hub shares the best practices from member organizations worldwide—powerful knowledge sharing.
Lydia, collaboration is essential. How does MSIF work with governments, patient organizations, and healthcare providers to create meaningful change?
Lydia Makaroff: We focus on deep partnerships. For instance, in India we worked with the MS Society of India to collect patient data and drive national conversations. It’s all country-led—we listen first, then support.
Advocacy and Access to Care
Peer, what were some of the biggest barriers MSIF helped to tackle when it comes to access to treatment and care?
Peer Baneke: Cost remains a major barrier. Also, challenges in diagnosis and lack of infrastructure—like refrigeration or trained specialists—are global hurdles. We’re prioritizing diagnosis in our future strategy.
Lydia, today, what do you see as the biggest ongoing challenges for access to MS treatments globally, especially in low-resource countries?
Lydia Makaroff: Access is still highly unequal—70% of treatments are used in just 30 countries. We work with WHO and advocate globally to highlight MS and push for accessible, cost-effective therapies.
How does MSIF improve access to rehabilitation?
Lydia Makaroff: We include rehabilitation in the Atlas of MS, and promote virtual rehab models like MS Ireland’s online classes. We also share promising practices to inspire global adaptation.
Patient Voices and Well-being
Peer, how did MSIF integrate the voices of people living with MS into decision-making during your leadership?
Peer Baneke: People with MS are now part of boards, committees, and research decisions. We created a global consultation group of people living with MS, and our strategy is now shaped by their voices.
Lydia, mental health is critical in MS. How is MSIF working today to support emotional well-being and resilience for patients and their families?
Lydia Makaroff: Mental health is core. We launched a wellness and complementary therapies guide offering evidence-based tools—like mindfulness, diet, and stretching—helping people feel more in control of their lives.
Research, Innovation and the Future
Peer, MSIF has been a driver for international MS research collaboration. Which research milestones are you particularly proud of?
Peer Baneke: I’m proud of launching the Progressive MS Alliance and our work on patient-reported outcomes. The aim was to translate lived experience into reliable, research-ready data.
Lydia, how will MSIF further support innovation and interdisciplinary research going forward, especially in fields like rehabilitation and social participation?
Lydia Makaroff: We’re scaling digital innovations and integrating patient priorities into research. We want people to feel progress—whether that’s managing fatigue or returning to work—not just measure it clinically.
Strengthening the Global MS Movement
Peer, what advice would you give to national MS organizations, especially smaller ones, to strengthen their advocacy and support efforts?
Peer Baneke: Learn from others, and use global tools—like WHO’s essential medicines list and the UN disability convention. Collect data; it’s the most powerful tool to influence governments.
Lydia, how does MSIF plan to empower national and regional organizations even more strongly in the future?
Lydia Makaroff: National MS organizations are closest to the community. We provide mentoring, peer networks, and advocacy tools to help them grow stronger, more confident, and more connected.
Final Reflections
Peer, what message of hope would you like to share?
Peer Baneke: There will be progress. Despite global challenges, research and advocacy are moving forward. The commitment of the MS community gives me great hope for the future.
Lydia, where can listeners learn more about MSIF?
Lydia Makaroff: Visit www.msif.org, and follow us on Instagram or LinkedIn. Also, check out www.worldmsday.org and join our MS Heart Challenge on May 30th.
Thank you for the incredible achievements so far, and for all the important work MSIF is doing and will continue to do in the future.
See you soon and try to make the best out of your life,
Nele
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