At the age of twenty-five, former actress, kathak dancer and model Sumaira Ahmed got diagnosed with Neuromyelitis optica, also known as NMO, changing the trajectory of her life. An autoimmune disease affecting the central nervous system and causing optic and neural attacks with harsh symptoms, NMO is an incredibly rare disease that alters the lives of those it affects. After being diagnosed, Ahmed found a severe lack of resources, especially mentally, for patients, driving her desire to change the lives of others like her led to the Sumaira Foundation. Using her healthcare background , Ahmed founded the nonprofit as a way to provide resources and mental health support to those with the disease. A true representation of perseverance and determination, Ahmed spoke to Women Who Win intern Naisha Roy about her journey leading the foundation.

1. How did your own experience with NMOSD lead to your decision to create the Sumaira Foundation? 

   I got diagnosed when I was 25 and it started with vision loss and it escalated to other symptoms pretty quickly. When I first got diagnosed and I was discharged, I was given just medical instructions, but no one really told me, “this is what you do now when you have a rare disease, these are the people to connect with.” And I felt that's so important. If you have a rare disease that nobody knows about, you need to feel some sense of belonging. 

So I took the liberty of Googling NMO in 2014 and it was not good. Basically Google told anyone who Googled NMO at that time that they didn't have more than five years to live. It was a very bleak future for us or if there was any future at all and it wasn't sitting down well with me; like, I just turned 25. My life is supposed to be starting just now. I got diagnosed with this crazy rare disease, and I'm taking treatment, but what about my heart? What about my head? What about my soul? I didn’t find what I was looking for. So that's kind of when I decided I'll just start one myself and see what happens.

‘And if what I do could help just even one person, then that, for me, was enough. So that's why I started the Sumaira foundation. I was two months into my diagnosis when we launched. So very, very new still to the illness, to the experience, to the community, but it's been eight years, so I think we've been doing something right.”

2. Would you say that the foundation focuses more on helping people mentally and giving them support that way or research and development in the disease itself?

All of the above. So we pride ourselves in supporting or trying to support every stakeholder involved in this disease. So of course patients first, right? I'm a patient myself. We're patient led, we're patient powered, we're patient centered. So what can we do for patients? And there's a whole slew of things that the foundation does to support patients, to provide patient education, and build that sense of community, but we also support researchers. We support doctors, we support our industry partners. So TSF is what we call it for short. We have four pillars: awareness, community, advocacy and research and all four pillars support virtually every stakeholder in this.”

3. You have several grants for tens of thousands of dollars in order to fund research into these conditions. What do you look for when determining a grant recipient, and what has been one of the biggest developments as a result of these research projects?

“We launched the grant program back in 2018. And this was primarily because it had been about four years into the foundation and I felt good about what we were doing for patients. Of course, we can always do more, but we were on the right track. And then I thought to myself, “I am so connected to all of these doctors and they need help too.” People assume that doctors know everything and have access to everything, but it's not necessarily true. And especially in rare diseases, finding seed grants for diseases like NMO and MOG-AD, it's not easy. That's when I was like, you know what? Let's help the underdogs. That's kind of always been my motto, especially in rare diseases. So we started doing these seed grants in 2018. I think the first year we funded 20,000 and then last year we funded about 150,000. So in a very short period of time, we've been able to multiply how many grants we give.

We have a grant committee, so this committee consists of two doctors, two non-clinicians, me as the foundation leader and a patient, and even a caregiver perspective. We have 11 points of criteria and we want to make sure that it's in line with science. One of my favorite projects that we have funded so far was in 2021. We funded the employment mapping of NMO. This was a nonscientific research study conducted by an MD PhD who wanted to see how having NMO affected people's employment. She has surveyed hundreds of patients across the world and is coming up with incredible qualitative data that I think is really insightful.”

4. Prior to the foundation, you were an actress and a proficient kathak dancer. Was it difficult to transition to the new career, or did it come easily to you? Do you still harbor those earlier interests in your daily life?

“My parents did a really nice job of introducing us to aspects of our culture and if we wanted to continue them, we did. And for me, it was like love at first sight. I loved all of that and then at a very young age, I decided I wanted to be a Bollywood actress and my parents were crazy enough to support me. My childhood was very colorful, very adventurous and very different for an American born in  New Jersey.

But I definitely don't dance anymore. It's very painful for my body to dance. And it's something that I grieve kind of every day; I love dance. I think once you're a dancer, you're always a dancer, but the pain is so bad and it's just something I've had to part ways with, but it's interesting because I think somehow my life has come full circle and through the foundation and all of this work that we're doing, I am back to filming. I am back to taking pictures all the time. I'm not dancing anymore, but like I'm on stage. I'm giving talks and presentations and things that I like. I like having an audience. It's just kind of who I've been since I was a kid. So. In a way, this advocacy work, this illness has brought me back to my roots, which is being on stage.”

5. What is your current favorite venture or project done through your foundation?

“At the moment we are filming a documentary, a docu-series rather, on all these patients and vignettes around the world and that definitely holds a very, very, very special place in my heart. One, because I get to meet so many amazing, inspiring people all over the world through this project. It also fulfills some kind of a personal thing too, because I'm filming. I'm back in front of the screen, but I'm also behind the screens, strategizing, helping the director, helping the producers and all of that. I'm really excited about this project. It's gonna take a long time, but I think when it finishes, it's going to have a great impact and raise a lot of awareness to hopefully millions of people across the world.”

6. What would you consider your or the foundation's biggest accomplishment or award and why?

“It's not very tangible, but I think earning the trust and the confidence of the patients who we serve is a really big accomplishment. It's not easy at all, but it's so satisfying when it does happen. There's nothing more moving and touching than when I hear from patients themselves how much this foundation means to them. They're a part of it, even if they're not officially a part of it. So to me, that's a huge accomplishment and that's something I'm really proud of.”

7. What would you say to people struggling with those neuroimmune conditions and recovering?

“This is not ideal, but there is a light at the end of the tunnel. You have to work hard for it and you need to keep your chin up, and positivity goes a long way. Our minds are so powerful and these are things I told myself and I'm glad I had that mental wherewithal to do that. But I do wish I heard it from other people and I would tell others that if you want something to happen for whatever situation you're in, and it's not happening, make it happen. You have no idea what you can accomplish, what you can do, whose life you can influence or inspire or who you can motivate just by trying.”

With projects still coming in from Mexico to Italy to Japan, the Sumaira Foundation is causing waves of change in the NMO community. The grant opportunities combined with the storytelling and community make it a second home for anyone recovering from the disease, and Ahmed’s foundation and story still continue to inspire hundreds of patients around the globe.

Thank you Sumaira for sharing this inspiring story with us. We are excited to have you in our global women’s network!