Introducing WSO Committee for Advocating Real Experiences of Stroke

27 Mar 2025 Stroke support

The World Stroke Organization (WSO) recognises the need for lived experience to play a central role in creating care practices and policies that truly resonate. To make this vision a reality, WSO announces the launch of WSO Committee for Advocating Real Experiences of Stroke (WSO CARES), a dedicated group that brings together stroke survivors, healthcare professionals and researchers.

The lived experience:

Stroke doesn’t end when the medical crisis is over — it starts there. What’s often seen as the finish line is, for us, the start of a new reality. One filled with challenges that reshape daily life, force adaptation and demand strength we never knew we had.

Survival is not a full stop. It’s a pause — a chance to decide how to move forward and what kind of impact we want to make.

We’re here because there’s still so much to do to normalise conversations about stroke. Survivors and caregivers understand what works, what’s missing and what needs to change. Our voices belong at the heart of stroke care, support and policy.

Nothing about us, without us.

The Professional Commitment:

We join the WSO Cares because we recognize the power of advocacy and lived experience to drive meaningful change. By working alongside stroke survivors and caregivers, we gain invaluable insights into the real challenges faced beyond clinical settings.

The formation of this group is a vital step forward in ensuring that stroke survivors are not only heard, but are instrumental in driving meaningful change across the stroke care landscape.

The core purpose of the WSO CARES group is threefold:

To build a global community of individuals who bring their lived experience of stroke to the forefront.
To engage the shared, first-hand experiences of stroke survivors to guide impactful initiatives.
To drive advocacy efforts and influence stroke research, policy, and practice, making sure that the needs and realities of those affected by stroke are prioritised.

Through these goals, WSO CARES aims to create a powerful, unified voice that puts real-life experiences at the centre.

The WSO CARES group is starting with a focused steering committee that represents a mix of people who have lived through stroke, healthcare professionals and advocates, all united by a commitment to shaping stroke care that truly reflects the needs of those affected:

Stacie Broek (Campaign committee and stroke survivor)
Marina Charalambous (Campaign committee, AHP, Cyprus Stroke Association, WSO Future Leader)
Alexia Kountouri (Cyprus Stroke Association and stroke survivor)
Sarah Belson (WSO International Development Manager)
Marika Demers (AHP, Future Leader)
Shamala Thilarajah (AHP, Singapore National Stroke Association)
Prakash Thangaveloo (Singapore National Stroke Association and stroke survivor)
Gamze Ozturk (Middle East North Africa Stroke Organization and stroke survivor)
Marco Giovannoli (Middle East North Africa Stroke Organization and stroke survivor)

This global network allows WSO CARES to work collaboratively across borders, pooling expertise and forging strong partnerships with international stroke associations. Together, we want to set a new standard in stroke care—one built on shared experience, medical knowledge and a commitment to real change.

As survivors, when we first began our recovery journeys, we realised that so much of stroke care was designed by people who hadn’t lived through it. Too often, we sat in appointments where our voices – and the realities of what we were experiencing every day — weren’t truly part of the conversation. Every day, we face a system created for us, yet it fails to meet our actual needs.

That’s why we’re so passionate about this group. WSO CARES was created to change this dynamic, to make sure that the voices of people with lived experience aren’t just heard but actually shape what stroke care looks like.

As healthcare professionals, this collaboration helps shape more patient-centered care, influence policy improvements, and strengthen public awareness efforts. When healthcare professionals and those with lived experience advocate together, their combined voices create a stronger, more credible impact, helping to drive policy changes, improve healthcare systems and raise awareness in a way that resonates with both the public and decision-makers.

WSO CARES provides a unique platform for professionals to not only share their expertise but also learn from those directly affected, ultimately working together to improve stroke prevention, treatment and long-term support worldwide.

This isn’t about ticking boxes. It’s about ensuring that the voices of people with lived experience carry weight and drive real change. With dedicated leadership and activity within WSO, we’re making this a reality.

Stay tuned as we carve out our medium and longer term objectives and expand the group’s membership to include more stroke survivors worldwide.

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