Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare autoimmune disease that can feel isolating and overwhelming. But for Sumaira Ahmed, her diagnosis became the spark that ignited a global movement. In this episode, we dive into her personal journey with NMO, the challenges she faced, and the resilience that led her to create The Sumaira Foundation (TSF)—an organization dedicated to raising awareness, supporting patients, and funding research for NMOSD and MOGAD.
Sumaira shares raw insights into her diagnosis, the treatment landscape then vs. now, and how finding community changed everything. We also discuss the power of advocacy, the impact of TSF Ambassadors worldwide, and the exciting developments shaping the future of NMOSD care.
Whether you’re a patient, caregiver, or simply interested in how one person can make a global difference, this conversation is filled with hope, inspiration, and practical insights.
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Introduction – Who is Sumaira Ahmed?
Nele von Horsten:
Hello, Sumaira. It’s such a pleasure to have you on the show. And greetings to Boston!
Sumaira Ahmed:
Hi, Nele. Thanks for having me. I know we’ve been trying to make this happen for a while, so I’m really excited that we’re finally here!
Nele von Horsten:
Absolutely! Before we dive into the interview, could you introduce yourself to our audience?
Sumaira Ahmed:
Sure! Hi, everyone. My name is Sumaira Ahmed, and I’m a patient living with seronegative Neuromyelitis Optica Spectrum Disorder (NMOSD). I live in Boston, Massachusetts and was diagnosed 11 years ago after sudden vision loss and weakness.
Six weeks after my symptoms started, I received my diagnosis. Just two months later, I founded The Sumaira Foundation, which is now 11 years old. I currently serve as the Executive Director.
Personal Journey with NMO
Can you take us back to the moment you first experienced symptoms of NMO? What were your initial thoughts?
Sumaira Ahmed:
Let’s rewind to the summer of 2014. I was getting ready to celebrate my 25th birthday—life was great! I had a good job, a strong social life, and everything felt normal.
Then, after oral surgery to remove my wisdom teeth, things changed. About a week later, I completely lost vision in my right eye. The irony? At the time, I was working in ophthalmology, which helped me get evaluated quickly.
A visual field test confirmed I had lost 70% of my vision in my right eye, but structurally, everything seemed normal. They sent me for my first MRI, which showed inflammation in my optic nerve and brain chiasm—the cause of my vision loss.
At the hospital, I was prescribed vitamin D and received IV steroids for three days. The doctors diagnosed me with idiopathic optic neuritis, estimating only a 16% chance of developing multiple sclerosis (MS) at some point. They reassured me that my vision would return in three months to a year, so I wasn’t too concerned.
What were the treatment options available when you were first diagnosed, and how do they compare to what’s available today?
Sumaira Ahmed:
That’s such a great question! When I was diagnosed in 2014, there were no approved therapies for NMO. The standard treatment was IV steroids for acute attacks, followed by plasmapheresis (plasma exchange) in severe cases.
For long-term management, I was put on rituximab, which at the time was the „gold standard“ for NMO treatment—even though it wasn’t officially approved for the disease. Unfortunately, I relapsed three times within my first few months on rituximab, so it didn’t work for me. I had to cycle through nine different biologics in my first four years before finding one that worked.
Now, in 2025, we have four FDA-approved therapies designed specifically for NMO patients. The landscape has changed drastically, which is incredible.
However, because I’m seronegative (Aquaporin-4 negative), it’s still very difficult for me and the 30% of NMOSD patients in my category to access these approved therapies, since they are only approved for AQP4-positive patients. But I remain hopeful that we’ll soon have better treatment options for seronegative patients too.
Facing Challenges & Finding Strength
Every patient has their low point—what was yours, and how did you find the strength to push through?
Sumaira Ahmed:
Oh, there were many low points. If I’m being honest, my first year with NMO was absolutely miserable. I was deeply depressed—my entire life had changed overnight.
I had dreams of becoming an actress, but suddenly, I couldn’t see or dance anymore. I was grieving the life I had planned, and I felt completely alone.
But then, something inside me just switched. It was like a fight-or-flight moment—a survival instinct. I realized that there wasn’t much advocacy or awareness about NMO, so I went online looking for support groups, celebrities with the disease, or a campaign like the Ice Bucket Challenge—but I found nothing.
Instead, I found horrific statistics, saying that people with NMO only lived for five years after diagnosis.
And I thought to myself:
„No way. This can’t be it. Not for me. Not for this disease.“
So, just weeks after my diagnosis, while on bed rest, I Googled:
„How do you start a foundation for a rare disease?“
And that’s how The Sumaira Foundation began. I wanted to change the narrative and show that people can survive and thrive with NMO.
What role did family, friends, or other NMO patients play in your journey?
Sumaira Ahmed:
I have to say, I was very lucky. I had an incredible support system from the very beginning. My family, friends, and colleagues all stepped up in ways I never expected.
Even though having a rare disease can feel incredibly isolating, I was never truly alone. My immediate family was there for me every step of the way. But beyond them, my extended family, friends, and even my workplace in ophthalmology were incredibly supportive.
It was also eye-opening to see how many people wanted to help—people I hadn’t spoken to in years reached out, offering their time, connections, and even financial support. It was so touching to see the kindness and generosity of those around me.
But I have to say, the biggest turning point was meeting other NMO patients.
One month after my diagnosis, Boston Magazine published an article about my story—not just about my illness but also about my mission to start a nonprofit. And after that article went live, something incredible happened:
Patients from all over the world started reaching out to me. 🌍
I started getting Facebook messages, emails, and comments from people saying,
„Hi Sumaira, my name is [so-and-so]. I live in [this country], and I have NMO too.“
I was shocked. Suddenly, I was connecting with other patients who had been living with NMO for years. And for the first time, I realized that not every story was tragic.
I started meeting people who had been stable for years, in remission, working full-time jobs, getting married, having kids—things I never thought possible for someone with NMO.
And that changed everything for me.
I went from feeling completely alone to realizing that there was a community of people who understood exactly what I was going through. And that gave me hope.
So in the end, it was the patients who saved me—just as much as my family and friends. That’s why I always say, building community is the most powerful thing we can do for people living with rare diseases. 💜
The Sumaira Foundation (TSF)
What motivated you to create The Sumaira Foundation, and what was your vision at the start?
Sumaira Ahmed:
I had zero experience in nonprofits, rare disease advocacy, or even healthcare policy. But I knew I wanted to raise awareness.
With my background in PR and entertainment, I used social media to spread the word about NMO. The first initiative I launched was „Voices of NMO,“ a storytelling platform where patients, caregivers, and doctors from around the world could share their real experiences—not just the grim statistics.
What were some of the biggest challenges in establishing the foundation?
Sumaira Ahmed:
The hardest part was that I was still a patient myself. I was balancing frequent relapses, treatments, and my health journey while simultaneously building a nonprofit from scratch.
It consumed me—mentally, emotionally, physically. I had to learn how to balance my life, my identity, and my disease, which took years to figure out.
Why is it crucial to have TSF Ambassadors in as many countries as possible?
Sumaira Ahmed:
Because outside the U.S., advocacy for NMOSD and MOGAD is almost nonexistent. Many people want to raise awareness but don’t know how or lack the resources.
Since 2019, our Ambassador Program has expanded to include almost 100 patients, caregivers, and clinicians in 35 countries. These ambassadors are now raising awareness, building local communities, collaborating with doctors, and advocating for change—just as I did in the U.S.
Can you share a particularly meaningful story of a patient or ambassador who inspired you?
Sumaira Ahmed:
Actually, I have a very recent story. Just last week, I received an email from a doctor at Brigham and Women’s Hospital in Boston, part of Harvard Medical School. She sounded worried. She told me, „I have a newly diagnosed young woman in the hospital. She’s only 19 years old, and her family is incredibly scared. She’s had a rough start with NMO. Does The Sumaira Foundation still reach out to patients? Could someone email her?“
I read this and immediately thought back to my own diagnosis—being alone in the hospital, afraid, and unsure of what my future held. I knew what she must be going through. So I wrote back to the doctor and said, „Yes, we do! But actually, I’m in Boston right now. If it helps, I can come see her in person.“
The doctor was shocked—she hadn’t expected me to respond personally, let alone offer to visit. But this is why I do what I do. So last week, the doctor and I went together to visit the patient.
When I walked into the room, I was immediately taken aback. The parents started crying the moment they saw me. That was a new experience for me. Usually, I make people smile or laugh, but this time, it was deeply emotional.
I quickly realized they weren’t crying out of sadness, but out of relief. As parents, they were desperate to see someone living with NMO—someone who was okay. And seeing me standing there, healthy and thriving, gave them hope.
I spent 40 minutes at the bedside, talking to their daughter, answering her questions, reassuring her family. I told her,
„Yes, this is hard. No one wants to be diagnosed with a disease. But let me tell you how far we’ve come. Getting diagnosed in 2025 is still tough, but it’s not as hard as it used to be. You were diagnosed quickly and correctly. You have access to the latest treatments. You have an amazing doctor, and you’re not alone—you have The Sumaira Foundation and a global community behind you.“
I hope my visit helped her, but honestly, it was a gift to me as well. It reminded me of my „why“—why I started this foundation in the first place.
When I founded The Sumaira Foundation 11 years ago, I imagined myself visiting patients in hospitals, being there for them in their toughest moments. But over the years, as the foundation grew, my time became consumed by meetings, operations, managing a global team, fundraising, and advocacy.
This visit brought me back to the root of it all—helping real people, face-to-face. It reignited my passion and reminded me why this work is so important. Sometimes, when you’re in the middle of growing a global movement, you lose sight of the personal impact. But she reminded me. She was a gift to me that day.
A Message for Other Patients
What do you wish more people knew about living with a rare disease?
Sumaira Ahmed:
That rare diseases are not as rare as people think—hundreds of millions worldwide live with them. Awareness and advocacy matter.
If you could share one message of hope with the NMO community, what would it be?
Sumaira Ahmed:
“Do not give up.” The last 10 years have brought unbelievable advancements, and I believe the next 10 years will be even better. There is always light at the end of the tunnel.
Quickfire Q&A Session
Complete the sentence: "For me, NMOSD is...."
Sumaira Ahmed:
For me, NMOSD has been a lifeline.
What development would you like to see in the field of NMOSD or MOGAD in the next 5 years?
Sumaira Ahmed:
I’d love to see:
- Faster and more accurate diagnosis—so patients don’t have to wait or suffer through misdiagnoses.
- Increased access to FDA-approved treatments for seronegative patients like myself.
- More NMOSD and MOGAD specialists globally—patients should have access to knowledgeable doctors, no matter where they live.
- A stronger, more connected patient community—because no one should feel alone with a rare disease.
Farewell
Finally, what advice would you give to someone who has just been diagnosed with NMO or another rare disease?
Sumaira Ahmed:
Feel what you’re feeling—it’s okay to be sad, angry, or scared. Those emotions are valid, but don’t let yourself get stuck in them. There will be light at the end of the tunnel, even if it takes longer than expected.
Believe in yourself. Our minds and bodies are capable of so much more than we think. If I had given up when I was told I had only a short time left, none of this would have happened. Don’t give up!
How and where can interested people find you online?
Sumaira Ahmed:
You can visit The Sumaira Foundation at www.sumairafoundation.org. The website is available in 25 languages so that people from around the world can access information in their native language.
We are active on social media, and you can follow us on:
Nele von Horsten:
That’s fantastic! Sumaira, thank you so much for your time and for sharing your incredible journey. I know I missed you at ECTRIMS in Milan, but I’m sure we’ll meet at another event soon!
Sumaira Ahmed:
Absolutely, Nele! I appreciate this opportunity, and I look forward to seeing you at a future event.
Nele von Horsten:
Thanks again, Sumaira, and best of luck with everything you’re doing!
Sumaira Ahmed:
Thank you! Take care!
See you soon and try to make the best out of your life,
Nele
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