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At nearly every international MS event I attend, I’m struck by how often the African voice is missing — or misunderstood. The data, the definitions, the frameworks — they rarely reflect our reality. Yet, here in South Africa, we live with MS every day. We know what it looks like when someone is misdiagnosed for years because no one thought to consider MS. We’ve seen what happens when the public system says, “There’s nothing more we can do,” because treatment is out of reach. And we’ve witnessed the quiet heartbreak of people whose symptoms were dismissed because they “didn’t fit the profile.” The wider view isn’t a luxury. For us, it’s a necessity. Different Realities, Not Deficits Too often, it’s assumed that African countries are simply “behind” — that we’ll catch up eventually. But we are not behind. We are navigating different systems, different challenges, different social landscapes. And that difference matters. In South Africa: Diagnosis is often delayed by years. There are no MS-specific care centres — not one. Most people with MS can’t access disease-modifying treatments (DMTs) unless they have private medical aid. Public hospitals have long waiting lists, limited neurology access, and no dedicated MS pathways. And the myth that “Black people don’t get MS” still lingers — doing real harm. Yet, amid this complexity, we’re finding new ways to move forward. Local Experts, Real Impact Some of the world’s finest MS minds are right here in South Africa. Our neurologists, researchers, and allied health professionals bring not just knowledge, but deep contextual insight. MSSA works hand-in-hand with them to bring this expertise to where it matters most — to the people living with MS. Our GP Upskilling Webinar Series, led by MS specialist Dr Dion Opperman, reached over 3,000 healthcare professionals — a major step forward in addressing delayed diagnosis, particularly in general practice where MS is often first missed. We’ve also launched the Brain Health Series, expertly guided by Dr Natanya Fourie and Dr Samantha Gregory — bringing evidence-based insights into fatigue, cognition, and emotional wellness directly to the MS community. Our MoveStrong with Susan wellness program links patients with a biokineticist to track movement, symptoms, and energy — because treatment is more than medication. Our collaboration with psychologists and neuropsychologists is growing steadily. We’re building connections, opening conversations, and shaping what support could look like — especially around brain fog, mood, memory, and emotional wellbeing. These are services in the making, and as more professionals come on board, we’re committed to making this kind of care more accessible, even within the public system. We’re also encouraged by the growing international interest in South Africa and Africa as a region. Experts like Professor Gavin Giovannoni have expressed genuine interest in collaboration, alongside others like Professor Roshan das Nair, whose work in neurorehabilitation and global health is helping shape new conversations about access and context-specific care. This isn’t theory — it’s the kind of practical expert insight that changes lives. Bridging Gaps, Not Just Filling Them At MSSA, we believe advocacy is more than speaking up — it’s about bringing people to the table who were never invited before. We’re not just a support organisation. We’re a bridge. Between patients and professionals. Between urban and rural. Between lived experience and scientific progress. We tailor support to each person who registers — and we listen, deeply, to what they need. We integrate expert insights into our webinars, social media, podcasts, and daily peer support. We connect people to answers, referrals, options, and hope. And we do all of this from the ground up, powered by experience, community, and trust. Rights Are Not Self-Activating South Africa has one of the most progressive Constitutions in the world — and it protects the rights of people living with chronic illnesses and disabilities in the workplace. But rights don’t activate themselves. Too many people with MS are still dismissed, sidelined, or quietly pushed out of jobs — not because they can’t work, but because their symptoms are invisible, unpredictable, and often misunderstood. MS-related fatigue, cognitive fog, or mobility issues are not always accommodated. Disclosure is risky. Support is rare. And few employers understand how reasonable accommodation can make all the difference. That’s why MSSA has brought in labour law specialists to support our members. We help people with MS understand: Their right to ask for reasonable accommodation How to safely disclose or delay disclosure What to do if they’re treated unfairly A legal right means little unless you know you have it — and know how to stand on it. This is another form of expert insight — not from a clinic, but from the lived realities of work, income, and dignity. The People Behind the Work None of this happens in isolation. Behind the scenes, a small team of dedicated volunteers works daily to help make sure people get the support they need. From WhatsApp responses to email guidance, referrals, resources, and check-ins — they are the heartbeat of MSSA. What makes this team truly powerful is not just their dedication, but their lived experience of MS. Each person brings insight that no textbook can teach. Together, they make MSSA’s work more authentic, more empathetic, and more impactful — because they get it. Why This Perspective Matters Globally The world needs a wider view of MS — not only because it’s the right thing to do, but because innovation, equity, and effectiveness depend on it. MSSA is feeding South African insight into global working groups, research conversations, and decision-making platforms. We’ve been welcomed as an Associate Member of MSIF, and we now represent South African voices in the Global Patient Council. We’ve been invited to partner with ECTRIMS on the upcoming Patient Community Day — a sign that Africa’s perspective is no longer invisible. When Africa speaks, the MS world listens differently. And we’re not whispering anymore. The Wider View This blog series will spotlight the experts, research, and real-world insight that help shape our work. But more than

When MSSA began, we were a small circle of compassionate support — a place where people with MS (pwMS) could turn for comfort, connection, and practical advice. But over time, as the needs grew clearer and the gaps in care more urgent, we grew too. Today, we’re still that place of comfort. But we’re also delivering resources, opening doors, and taking part in shaping the future of MS in South Africa and beyond. From Local Support to Global Advocacy Some of the milestones that reflect how far we’ve come: Access on the Global Stage In 2023, the WHO added three DMTs to the Essential Medicines List — Rituximab, Glatiramer Acetate, and Dimethyl Fumarate. MSSA supported this push through global advocacy efforts with MSIF, marking a crucial step toward improving treatment access in low- and middle-income countries, including South Africa. Upskilling General Practitioners One of our most impactful initiatives was the GP Upskilling Webinar Series, developed and led by a leading MS specialist neurologist. This series addressed South Africa’s urgent need for earlier diagnosis and timely treatment — and equipped over 3,000 healthcare professionals with critical MS knowledge. From COVID Pivot to Permanent Resource What started during the pandemic grew into something much more. Our YouTube webinar library now houses a growing archive of practical, expert-led sessions. These recordings have extended the value of each event far beyond the original audience — and brought the voices of South African MS specialists into homes across the country. Workplace Rights and Real-Life Help By listening to the workplace challenges our members face, we brought in a Labour Law expert to offer tailored advice. It’s made a real difference in helping pwMS navigate disclosure, unfair treatment, and employment rights. Personalised, Human-Centred Support Every person who registers with MSSA is more than a name on a list. We take time to understand their diagnosis, life circumstances, and concerns — and offer support that’s personal, practical, and grounded in lived experience. Creating a Place for Younger Voices As more young people began to be diagnosed, we created space for their unique journeys — while integrating their voices into our main support structure. We know that the wisdom of older generations and the energy of youth are both essential in building a strong MS community. Building a Resource of Care Options With no MS-specific care centres in South Africa, we began building a directory of trusted facilities — especially for those in need of palliative or long-term support. As the MS community ages, this resource is becoming increasingly important. The Big City Tours Our Big City Tours brought MS education directly to communities — giving people the chance to hear from MS-specialist neurologists and ask the questions they rarely have time for during clinic visits. Global Recognition and Representation After years of engagement, MSSA was formally welcomed as an Associate Member of MSIF — a dream long in the making. It marks our official presence on the global MS stage. We were also invited to participate in the Global Patient Council — ensuring South Africa’s lived MS experience contributes to shaping international conversations on inclusion, care, and innovation. Up-to-Date, Always We consistently bring the latest research, treatment updates, and digital health trends into local focus — making global progress accessible and relevant to our members. Stories that Speak the Truth Over the years, we’ve collected powerful stories from people across South Africa living with MS. These upfront and personal narratives reflect real-life experiences — breaking stigma, sparking understanding, and showing what MS really looks like. A More Inclusive MS Community One of our quiet but proudest milestones has been the growing inclusion of South Africa’s Black community — a group long sidelined by the myth that “Black people don’t get MS.” As we’ve reached out, the light has gone on. There’s magic in being seen, heard, and believed — and in watching new connections form across race, region, and circumstance. A Living, Evolving Chronicle This blog is just a snapshot — not a checklist. Our advocacy is ongoing, growing with the people we support. These milestones remind us of what’s possible when we listen deeply, act intentionally, and build bridges across every barrier. From support to systemic change — this is MSSA’s journey. And we’re only just getting started.