Sumaira: I had my first NMOSD attack in 2014 and was diagnosed six weeks later. I went from being a 25-year-old socialite in Boston, to suddenly being blind, unable to walk, and told I wouldn’t live long. I wasn’t ready to accept that fate – it changed the course of my life.
I mentioned how difficult it was to find anyone with NMOSD when I was first diagnosed. I needed connectivity, community, and support. I googled how to create a foundation to build a community myself – and I had it in place just four months after my diagnosis. I’m proud of what The Sumaira Foundation has become and how our global network supports others living with this condition.
WHAT MAJOR ADVANCEMENTS HAVE BEEN MADE IN NMOSD CARE AND TREATMENT?
Victoria: We have invested about $75 million into research, catalyzing more than 100 innovative studies to understand NMOSD, identify therapeutic targets and define biomarkers. These efforts enabled clinical trials which led to the development of the first three U.S. Food & Drug Administration (FDA)-approved therapies for NMOSD. None of these were available when Ali was diagnosed in 2008. After over 100 years with no clinical trials or approved treatment, these medicines were all approved within a year of one another, starting in 2019. To do this so quickly was an incredible accomplishment that required every stakeholder’s involvement. But just as important to these achievements was our dedication to always keeping patients first and foremost in our minds.
Sumaira: Since my diagnosis and the founding of The Sumaira Foundation, there have been so many more resources created to help support the NMOSD community, fund research and move the needle on treatment. I believe the key to living with this condition is community, and that if we all work together, we’ll find a cure someday.
WHAT MAKES YOU MOST HOPEFUL FOR THE FUTURE OF THIS COMMUNITY?
Victoria: The head of our scientific team always says, “Hope without a plan is really just a wish.” The plan right now is to find more therapies and, ultimately, a cure. Our foundation and the community – so brave with so many heroes – will carry the light forward until a cure is found. And even though our mission today is focused on NMOSD, the science of predicting and stopping relapses and the medicine to cure NMOSD through tolerization we are leading today is opening doors to help cure all autoimmune diseases tomorrow.
Sumaira: Getting diagnosed today is very different from when I was diagnosed. It is exciting to see how far we have come. I’ve seen all this happen in just nine years since my diagnosis. Imagine what will happen in the next nine – hopefully a cure – the future is bright.
To learn more about the work that Victoria and Sumaira do, you can visit The Guthy-Jackson Charitable Foundation and The Sumaira Foundation, respectively. You can also learn more about other NMOSD advocacy groups here.