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Marissa

@nmoadvocate

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TSF North American Liaison
Lead Ambassador - Canada

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🇨🇦 One morning, Marissa woke up feeling unwell, not realizing that her life was about to change forever…

What began as unexplained symptoms quickly turned into a frightening medical journey that led to a diagnosis of NMOSD, a rare autoimmune disease that attacks the optic nerves and spinal cord.

Like many patients, Marissa faced uncertainty, hospital visits and the emotional weight of living with a rare condition few people had heard of. Yet through every challenge, she showed incredible courage and resilience.

Her story is a powerful reminder of why awareness, research and community support matter. No one should have to face NMOSD alone - and stories like Marissa’s help bring light to a disease that too often remains in the shadows.

Click the link in our bio to read Marissa’s NMOSD story. taken in Ontario, Canada by @nmoadvocate

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7 months ago

Peak to Path | One Force: Global Momentum

I was honored to participate with these other professional advocates for rare diseases at the Amgen Uplizna Global Summit in London, England this week. Representatives from Spain, Ireland, Italy, Belgium and Canada. All with different rare neuroimmune diseases but all with the same journey! I spoke to medical and administrative professionals from all over the world about my journey living with NMOSD and after our session we received a standing ovation! I was overwhelmed with gratitude that I am able to advocate and make a small difference! Thank you Amgen for having me!! 🇬🇧💜
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#nmoadvocate #rarediseases #amgen #uplizna #globalsummit taken in London, United Kingdom by @nmoadvocate

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5 months ago

Treatment Day!
Follow along what a treatment day for NMOSD looks like. I get an Uplizna infusion every six months to deplete my B cells that are attacking my body.
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#nmoadvocate #raredisease #nmosdawareness #infusion #uplizna by @nmoadvocate

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5 months ago

I’m excited to be participating in #ectrims patient day in Toronto next week! If you want to learn from the experts join us in person or online! It’s not too late to register!

🔗 Register here: https://www.ectrimspatientcommunity.eu/registration

#nmoadvocate #mstoronto2026 #ectrims4me #patientday by @nmoadvocate

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3 days ago

Repost• @ontariorare

We’re proud to welcome The Sumaira Foundation as an endorser of OntarioRare.

OntarioRare is working on behalf of the rare disease community to help create a province that better supports the unique needs of people living with rare diseases and their families.

We are proud to have our efforts endorsed by The Sumaira Foundation, whose support strengthens our collective voice as we advocate for meaningful change across Ontario.

Together, we are building momentum toward a more equitable future for the rare disease community.

#thesumairafoundation #ontariorare #nmoadvocate #rarediseaseadvocacy #canadianpolicy by @nmoadvocate

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3 days ago

Repost • @winniethepoohfit

Living with NMOSD, MG, MOGAD, AE, extreme fatigue is common. I find towards the last month before my next treatment, I feel especially tired and my symptoms start flaring up again. It’s a reminder to give yourself GRACE! 🧡🩷🌸

#nmoadvocate #nmosdawareness #raredisease #fatigue #flareups by @nmoadvocate

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4 days ago

“MG has taught me that strength is not defined by how much we can accomplish on our strongest days, but by the courage to keep moving forward on the difficult ones”, says Valentina.

Meet Valentina, TSF’s Newest Ambassador of Nigeria! 🇳🇬

Oluwaseyifunmi Valentina Oladipo (MPH), is a young woman living with #myastheniagravis (MG) and a professional in the field of public health. She is a clinical nutritionist with an academic and professional background in healthcare and is passionate about raising awareness of disease prevention, and health promotion.

Her experience with #MG has also strengthened her passion for health, education, and advocacy. Furthermore, being a health professional has given her a unique perspective. It has helped her understand the frustration that can come with being misunderstood, the importance of compassionate healthcare, and the difference that knowledge, support, and a listening ear can make.

“My journey with MG might be a part of my story, but it does not define who I am. Today, I choose to transform my experience into purpose, and to use my voice to remind others that even when the journey feels difficult, they are not alone”, Valentina shared.

As an Ambassador for TSF, Valentina is honoured to turn her lived experience into purposeful advocacy. She is passionate about increasing awareness and understanding of MG, helping to challenge misconceptions about invisible disabilities, promoting appropriate care, and amplifying the voices of patients and caregivers across Africa and beyond.

Welcome Valentina! 🧡🩷🌸

#nmoadvocate #thesumairafoundation #myatheniagravis by @nmoadvocate

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4 days ago

I’ll be on the panel in session 2 - NMOSD & MOGAD. Send me your questions live!

Your questions deserve a place in the conversation.

Research is not only about scientific discoveries. It is also about making those discoveries understandable, listening to patients’ experiences and ensuring their priorities are part of the conversation.

As ECTRIMS approaches, we invite our community to join the ECTRIMS Patient Community Day 2026, a free global event bringing together patients, caregivers and experts to discuss research, treatments and advances in #mogad, #nmosd & #multiplesclerosis.

💬 What would you like to ask a neurologist or researcher?
🙋‍♀️ Is there something about your condition you would like to understand better?
🙋 A research topic you would like explained in everyday language?
🙋‍♂️ A challenge in your daily life you wish researchers better understood?

Share your questions in the comments. Your input can help highlight the topics that matter most to our community, and TSF can help relay these concerns and share relevant insights.

📅 Friday, 23 October 2026
📍 Toronto, Canada + online
🎟️ Free registration

#ectrims #nmoadvocate by @nmoadvocate

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6 days ago

Happy Thanksgiving! 🍁🦃🇨🇦

I am thankful for my friends and family who support me throughout this journey! I am especially thankful for my treatment which keeps me stable and mobile. Last but not least my TSF family, the connections with other patients, caregivers and advocates that that I have met along the way and people working in the rare disease community! 🩷🧡❤️ by @nmoadvocate

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8 days ago

Repost • @rarediseasedayofficial

🧠 Living with a rare disease doesn’t only impact your health. It can affect every part of your life.

The uncertainty. The daily challenges. The constant feeling of being misunderstood and alone.

This #WorldMentalHealthDay, let’s continue building a future where mental wellbeing is recognised as an essential part of rare disease care.

TSF has a mental health support group the last Monday of the month! The next one is Oct 26 at 8pm EST. Register on the TSF website or FB page!

#RareDiseaseDay #WorldMentalHealthDay #thesumairafoundation #nmoadvocate by @nmoadvocate

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9 days ago

This week I was honoured to share the stage with these other amazing advocates at the Amgen Canada Mission Week! I spoke of my journey living with NMOSD and how my treatment has helped me gain my mobility back. It was an opportunity to meet the men and women that work tirelessly behind the scenes in research and development of these important medications to help people with rare diseases and in some cases, saved their lives! Thank you! 🙏 🩷🌸

#nmoadvocate #missionweek #amgen #advocates #raredisease by @nmoadvocate

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10 days ago

Repost• @thepmcf

This week, we’re celebrating the opening of a new Cellular Immune Therapy Ward at Princess Margaret Cancer Centre — an important expansion that will help accommodate the growing number of patients receiving CAR-T, allogeneic and gene therapies, and autologous transplants each year.

We’re deeply grateful to our generous donor community and Ontario Health for helping make milestone moments like this possible, and to the dedicated teams at The Princess Margaret who continue to transform what’s possible for patients across Canada and around the world.

Every gift to The Princess Margaret Cancer Foundation helps turn innovation into action, supporting the people, technology and infrastructure needed to deliver world-class cancer care.

#nmoadvocate #newtreatment #pmcf #immunetherapy #hope by @nmoadvocate

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10 days ago