Six Months in: Reflections from MSIF’s CEO Lydia Makaroff

Six months into the role, MSIF’s new Chief Executive Dr Lydia Makaroff reflects on a busy period of learning, connection, and action. From global advocacy to grassroots collaboration, and governance meetings – Lydia shares what she has learned at MSIF so far and looks forward to the road ahead.    

It’s been half a year since I stepped into the role of Chief Executive at MSIF. The learning curve has been steep, but what’s guided me throughout is listening to people who live with MS and understanding what really matters to them 

People affected by and living with MS are influencing national policy, creating support networks, chairing committees, designing research, and holding governments accountable. This kind of work is happening across the whole MSIF movement, and seeing it up close has left me feeling both inspired and grateful. 

Meeting MSIF members 

Over the last six months, I’ve had 21 one-on-one meetings with MSIF’s member organisations – with  many more to come. People have shared their challenges, their wins, and their dreams. I have spoken with people coordinating services for thousands of individuals affected by MS with barely any staff, and with others who are starting fresh in countries where MS is still misunderstood. Each conversation has made me stop and reflect on what kind of support from MSIF makes a difference, and how MSIF can show up in a way that matches what people really need.

I have also been lucky enough to visit our members in Italy, Belgium, Ireland, the UK, and the Netherlands. In Ireland, I visited a respite centre offering practical support and dignity to families. In Italy, I met with a team delivering personalised rehabilitation services with compassion and innovation. There is something very grounding about being able to sit across from someone, hear their story, and walk through their local context with them. I’m looking forward to continuing these visits, starting with the Progressive MS Alliance meeting in June, then meeting our members in Australia and New Zealand in August, and catching up with many more at ECTRIMS in September. 

Making an impact 

The wider MSIF team has been hard at work over the past six months. Colleagues have travelled to South Africa and Namibia to support national organisations and help strengthen leadership across the region. We’ve delivered training in Latin America and the Middle East and North Africa, with content shaped directly by what MS organisations told us they needed.  

At the global level, we spoke at the World Health Assembly to ensure that MS is recognised, prioritised, and better resourced in global health discussions. We launched a new multilingual guide on wellness practices and complementary therapies, developed in collaboration with people living with MS and member organisations. We also published new Atlas of MS data on paediatric MS, estimating that over 31,000 children and adolescents are living with the condition worldwide. Through the PROMS Initiative, people affected by MS are now helping lead global conversations on the use of patient-reported data and wearable tools in healthcare – ensuring that new tools are ethical, inclusive, and rooted in lived experience.  

World MS Day this year was another reminder of how powerful our movement can be when it comes together. The creativity, the openness, and the courage shown by people affected by MS during the campaign was inspiring. It was a global expression of what it means to live with MS and fight for a better future. We were proud to see our World MS Day video, “My MS Diagnosis”, recognised as a finalist at the Smiley Charity Film Awards. I had the joy of celebrating this moment with MSIF’s talented Communications and Campaigns team at the awards ceremony. I also joined thousands of people around the world in taking part in The May 50K, raising awareness and funds for MS research and support. 

Behind the scenes, our regular in-person staff team days every five weeks have been a highlight for me – bringing us together for training, collaboration, communication, and laughter. 

None of this would be possible without the energy and dedication of the MSIF team, the strong partnerships we’ve built with members, and a shared belief that the voices of people with MS should lead the way. 

Multiple Sclerosis International Federation The May 50K

Strong governance 

Another part of my role that I deeply value is working with MSIF’s governance and expert groups, each bringing a unique perspective and set of skills. The Board of Trustees, the Nominating Committee, the Finance, Audit and Risk Committee, and the Governance and Membership Committee each play an important role in providing leadership, ensuring accountability, and supporting strong governance. Alongside them, the People with MS Expert Group, CEO Expert Group, Fundraising Expert Group, and International Medical and Scientific Board ensure that lived experience, strategic thinking, fundraising insight, and scientific expertise guide our work at every level. 

Looking ahead 

There’s a lot coming up that I’m genuinely looking forward to. We are getting ready to release updated data from the Atlas of MS. This research will help show where gaps still exist in access to diagnosis and care, and it has been built with input from people who know exactly how those gaps play out in daily life. We are also finalising a new paper that focuses on improving diagnosis globally. The paper includes clear actions for MSIF and our members, shaped by what people affected by MS have told us throughout the process. 

Thank you  

When I took on this role, I said I wanted to lead by listening. That still holds true. What I have heard over these six months is that our global MS movement is driven by people with courage, hope, frustration, determination, and an unstoppable drive to create change.  

So, thank you. Thank you for welcoming me, challenging me, and trusting me to be part of this journey with you. It is not easy work, and there is a long road ahead, but I believe in this movement and in the people at the heart of it. 

Lydia Makaroff  | Chief Executive | Multiple Sclerosis International Federation