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Female Disruptors: Sumaira Ahmed of The Sumaira Foundation On The Three Things You Need To Shake Up Your Industry

An Interview With Candice Georgiadis

From the beginning of my work with the foundation, I was always told to stay true to myself. That advice has stuck with me because of my own ethos and beliefs that being genuine and authentic is far more relatable and personable than trying to be someone you’re not. If someone researches the foundation and checks out our website, they’ll so clearly see me behind it all and my own personality, and they’ll know I’m being true to myself with the work I do.

As a part of our series about women who are shaking things up in their industry, I had the pleasure of interviewing Sumaira Ahmed.

Sumaira Ahmed is the founder and executive director of The Sumaira Foundation (TSF), an international nonprofit she started after she was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD)/chronic relapsing inflammatory optic neuritis (CRION) after experiencing sudden and severe vision loss and weakness and numbness. Prior to her illustrious career in health care and hospital administration in Boston, Sumaira worked as an actor/model in Hindi-/Bengali-language media, primarily in southeast Asia, and she is a classically trained Kathak dancer and has performed in prestigious venues including Madison Square Garden, the Dolby Theatre, Santiniketan, and the Rudolf Steiner Theatre. Sumaira is now working to expand TSF and is dedicated to the foundation’s goals of generating global awareness of NMOSD and MOG-AD, supporting research to find a cure, patient advocacy, and creating communities of support for NMOSD and MOG-AD.

Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”? What led you to this particular career path?

This career path is deeply personal for me. In the summer of 2014, my life was forever changed when I was unexpectedly diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD)/chronic relapsing inflammatory optic neuritis (CRION) after experiencing sudden and severe vision loss and weakness/numbness. NMOSD is a rare autoimmune disease in which patients experience vision loss, paralysis, paraparesis, weakness, numbness, spasticity, vomiting and bladder/bowel dysfunction. I turned to the online world to find support and to find people going through similar experiences, but I thought there was a real gap in terms of patient advocacy for those struggling with NMOSD. Less than two months after my diagnosis, I founded the Sumaira Foundation (TSF) to generate global awareness for NMOSD and myelin oligodendrocyte glycoprotein antibody-associated disease (MOG-AD) and to create a true community of support for patients.

Prior to starting the foundation, I was a major in PR and was working in the health care industry, including various roles such as the marketing and business development manager and the director of strategic marketing and business development at Brigham and Women’s Hospital in Boston. I was able to take what I had learned during my time in the health care industry and apply it to my work with the foundation in order to create a better future for patients. I also worked as an actor/model in Hindi-/Bengali-language media, primarily in southeast Asia, and in 2015, was crowned the first Miss Bangladesh-USA advocating for equal opportunity education for Bangladeshi children in efforts to increase tolerance and strengthen the country’s international presence, economy and infrastructure. In addition to serving as the founder and executive director of TSF, I also currently work full time at Mass General Brigham as the business development manager for the global advisory.

Can you tell our readers what it is about the work you’re doing that’s disruptive?

When I was first diagnosed with NMOSD, I was only 25 years old. I was living in the cosmopolitan city of Boston and was savvy with social media, especially after working in PR, so I first turned to the internet to find support, hope and encouragement from other people that were possibly experiencing a similar situation to my own; however, I couldn’t find the support I needed at the time. There were a few existing support groups, but I recognized there was a gap in patient advocacy in general for those with the rare diseases of NMOSD and MOG-AD. So, I decided to give NMOSD a bit of a “Sumaira spin” and created a group for people to feel supported, seen and heard while doing things my own way. The Sumaira Foundation recently celebrated its eight-year anniversary, and in all this time, I have never once looked at how other people were running their foundations for inspiration. I’ve based my decisions about the foundation off looking inward and making NMOSD personal — thinking what I needed as a patient and considering what other people might need as well. I conducted research online to see what other patients were saying, taking into account their fears, complaints and hopes. I saw a need that needed to be filled in the space of rare disease and recognized that we had to start talking about the disease differently and supporting people differently, and I haven’t looked back since creating TSF in 2014.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

When I decided to start the foundation, I actually Googled “how to start a foundation.” Google told me that to start a foundation, all it would take was following five easy steps, and I believed it. I thought to myself, “Only five simple steps? Ok, I can do this!” Of course, I quickly learned that it takes much more than just five steps to successfully start a foundation from the ground up, and I would tell this to anyone else out there that has this same desire to start a foundation. This taught me that there isn’t a “one size fits all” process for starting something, and that although the journey in starting something new can be difficult, it’s absolutely worth it in the end.

We all need a little help along the journey. Who have been some of your mentors? Can you share a story about how they made an impact?

I have been very lucky to have had two important mentors in my life. My first mentor was my boss when I was working in ophthalmology in Boston. So much of what I applied to TSF, especially in the early days when I had just started the foundation, were from lessons he taught me and from what he did with his own business. He is a doctor, and I saw how he approached care with a patient-centered focus, and I learned from this and did the same with TSF. I worked with him for five and a half years, and everything I did in the first few years of starting the foundation were based on lessons I learned from him. As the foundation grew, my second boss at Brigham Women’s Hospital became another mentor of mine. He is also a doctor, and he really took me under his wing when I worked there. He was incredibly supportive of the foundation and really wanted to see me grow both professionally and personally. His support was crucial to the continued growth of the foundation.

In today’s parlance, being disruptive is usually a positive adjective. But is disrupting always good? When do we say the converse, that a system or structure has ‘withstood the test of time’? Can you articulate to our readers when disrupting an industry is positive, and when disrupting an industry is ‘not so positive’? Can you share some examples of what you mean?

I have been called a disruptor in both a positive and negative sense, but I’d like to think what we’ve done with the foundation is disruption in a good way. Disrupting an industry is good when there is a need for disruption. We all know there are industries that could always use improvement or that could evolve, but there are also programs that are already successful. If you’re disrupting something that is already strong, it begs the question, “why fix something that isn’t broken?” I think being a disruptor is positive in spaces where it’s welcome.

When I was called a disruptor in the negative sense, I was initially taken aback by the comment. However, the more I thought about it, the more I realized that my “critic” was right. I need to be a disruptor in order for things to change in the rare disease and patient advocacy space. I think the work we’re doing and the way we operate as a foundation shows that we are authentic. Our unique voice can be seen as a disruption in the nonprofit space. When I started TSF, I wanted to run the foundation my own way and for people to see my authentic voice shine through in the work we do and the content we create. I wanted other NMOSD patients to be able to relate to me and my journey, so we focused on creating TSF’s innovative model in which we possess a distinguished digital presence and brand. We also place the priority on connecting with real people through our “Voices of NMO and MOG” sections on our website, where real patients share their stories, and through our TSF Ambassadors program that consists of patients around the world. My goal is for patients to feel like TSF is truly the peoples’ foundation and that their voices matter and need to be heard. We’re disrupting the status quo for foundations, but that’s part of TSF’s beauty; we’re patient led, patient-focused and always evolving.

Can you share 3 of the best words of advice you’ve gotten along your journey? Please give a story or example for each.

  1. From the beginning of my work with the foundation, I was always told to stay true to myself. That advice has stuck with me because of my own ethos and beliefs that being genuine and authentic is far more relatable and personable than trying to be someone you’re not. If someone researches the foundation and checks out our website, they’ll so clearly see me behind it all and my own personality, and they’ll know I’m being true to myself with the work I do.
  2. I’ve learned that sometimes, I simply must listen. Listening can prove to be the most productive action because that’s truly where you learn, grow and find inspiration. In the industry of nonprofits and foundations, people love to hear themselves talk; however, when I grew into this role of a patient leader, the best advice I received was to instead listen more and talk less. That essential listening has inspired so much of what we do with the foundation today.
  3. When I started TSF, my first mentor told me to always start small and aim to grow scalable and sustainably. I never want to rush a project and have an overnight success just for it to decline the next day. I want the foundation and our work to be sustainable and to make a long-term impact with our stakeholders and patients.

We are sure you aren’t done. How are you going to shake things up next?

Our docuseries, “Imagine My Life with NMO,” is going to shake things up in the future. We’ve been filming the series since the spring of 2022, and it showcases the experiences of people living with NMOSD around the world. I interview patients, their loved ones and doctors to understand the actual lived experience with NMOSD in different countries and regions. It’s rewarding being able to travel the world to illustrate the full picture of what a patient’s life looks like with this rare disease. Although docuseries have been done before, “Imagine My Life with NMO” is being done differently with a cinematic touch that will attract the masses; you don’t have to be affected by rare disease to relate and to be touched by each story shared in the series. It’s also compelling to see the beautiful and interesting cities, like Munich, Germany in our first episode, where we film become a supporting character in each episode. Through this series, I feel as though my life has come full circle. I’m using my past life of acting and the arts to interview patients and to lead this organization. Hopefully initiatives like “Imagine My Life with NMO” lead to a brighter future for those with NMOSD and more awareness of the disease. Essentially, one of my main goals with the series and with the future of the foundation is to make rare disease cool!

In your opinion, what are the biggest challenges faced by ‘women disruptors’ that aren’t typically faced by their male counterparts?

Being a female disruptor means you must make tough decisions and put your foot down. In my case, I am oftentimes in a position where I have to be firm and make executive decisions, which can result in people thinking I’m too harsh or too driven by the work. Some insulting words that people may use to describe female disruptors are words people would never use to describe our male counterparts. Instead, men would be labeled as hard-working or seen as simply doing their job. When it comes to being a female leader in this space, I often run into these negative connotations. However, in my eyes, as long as the work is getting done and we’re making a positive impact, I’m fine with being perceived this way.

Do you have a book/podcast/talk that’s had a deep impact on your thinking? Can you share a story with us?

The book “Brain on Fire: My Month of Madness” by Susannah Cahalan has made such a large impact on me. The author is a New York Times bestseller, a fellow rare disease patient and now also a friend. The book details her struggle with a rare form of encephalitis and her recovery. I read her book within two weeks of being diagnosed with NMOSD and reading her work completely changed how I saw what happened to me. Our stories were incredibly similar, and the fact that she was able to take her story and experiences and turn them into something that helped thousands of people around the world gave me the hope and courage to be able to do the same. I did not start the foundation for accolades; I started it to make a difference. If I can help one person, then the work of the foundation is a success. Her book not only inspired me as a patient, but also triggered the drive in me to start a foundation and make a difference.

I also love the podcast “Radiolab.” I’ve been listening to the show since 2017, and it has had a tremendous impact on my way of thinking about my diagnosis and about rare disease. The hosts do a deep dive into stories, dissecting stories’ issues and challenges to try to find solutions. They make you think in a different way. For example, my favorite episode is when they discuss the story of Henrietta Lacks, a Black woman whose cancer cells are the source of the HeLa cell line, one of the most important cell lines in medical history. The way they interviewed all those affected by this was so impactful, and they paint a true picture of a story, which is what I try to do with the foundation and patients’ stories.

You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

Overall, I think we need more happiness in the world. If I could give people a gift or inspire a movement, it would be the ability to live in the moment. In today’s society, we are so fixated on the past or anxious about things that haven’t even happened yet; I think a large reason for this is because of social media and the obsession with phones never allowing us to feel present. Illness has forced me to live for the moment and to appreciate the present, and I would love to be able to give this ability to other people. It’s a liberating feeling, but unfortunately, it’s a feeling you only come by after going through tough times. I think people being kinder to one another, expressing happiness and living in the moment would generate the most amount of good for the most amount of people.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

I enjoy reading and have come across many great quotes in my life, but I don’t believe you can live your life by quotes. I feel the biggest challenge is often maintaining hope in the face of adversity, so I’ll offer this quote from James Baldwin: “The hope of the world lies in what one demands, not of others, but of oneself.” This quote is relevant to my life because it describes the feeling of accountability and how, if you want to see a change in the world, you must first make a change within yourself.

How can our readers follow you online?

Readers can connect with TSF and I through our social media accounts:

This was very inspiring. Thank you so much for joining us!

Female Disruptors: Sumaira Ahmed of The Sumaira Foundation On The Three Things You Need To Shake Up… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.