Sumaira Foundation
Sumaira Ahmed established the Sumaira Foundation so that fewer rare disease patients would have to face the experience by themselves.
Sumaira Ahmed is diagnosed with neuromyelitis optica spectrum disorder (NMOSD). However, this diagnosis did not come easy. Her vision was progressively worsening and after numerous trips to specialists she still had no answers. Finally, the diagnosis came, giving her answers as well as a whole new set of challenges.
NMOSD is an autoimmune condition. It affects both the optic nerve as well as the spinal cord.
For Sumaira, like many rare disease patients, her diagnosis changed the course of her entire life. “A self-described fashionista with a vibrant personality,” she decided to use her energy to support the medical and emotional journeys of other rare disease patients like herself. Throughout her diagnosis, she desired so strongly to be a part of the decision making process. But she didn’t have the resources or the information she needed.
She knows what the trials of diagnosis and treatment are like. She’s gone through the frustration, the worry, the fatigue, the isolation, and the ongoing fight. It was time to help others through the journey as well.
Alexion
Sumaira was asked to share her story with the employees of Alexion in an effort to help them understand more about a NMOSD patient’s needs.
The company is proud to say that they are not just focused on the medicines. They understand that that is not the only thing that rare patients need. So, they work with patient organizations to help ensure patients get the support they need at every step in the process. It’s not surprising that increased collaboration typically produces better outcomes, and this sentiment certainly reigns true in the world of rare disease. Alexion is striving to build their network of collaborators, their innovative tools, and their interactions with patients.
Too often companies focus simply on the scientific solution to patients needs. The issue is they define these needs by what is biologically occurring in their body- not by their experience living with the disease on a day to day level.
As Alexion was able to develop the first FDA approved therapy for NMOSD, it is reassuring to hear that they have not become comfortable in their role for this condition even after this initial success.
They have expressed their gratitude for the patients that have shared their perspectives with them, like Sumaira, and for all of those who have participated in their clinical trials.
