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.
Introduction – Who is Sumaira Ahmed?
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.
Finally, what advice would you give to someone who has just been diagnosed with NMO or another rare disease?
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?
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.
See you soon and try to make the best out of your life,
Nele
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