The founder and executive director of the Sumaira Foundation discussed her experience living with NMOSD and the global organization she created to help patients with the same condition. [WATCH TIME: 6 minutes]
WATCH TIME: 6 minutes
“Very early on I realized, not only do I want to help patients or a patient, I want to help patients all over the world. I know that this disease doesn't discriminate in terms of age, and race, gender, sexuality, or political preferences. This can affect anyone.”
Neuromyelitis optica spectrum disorder symptoms of the condition include vision loss, paralysis, and incontinence. If patients are not diagnosed or treated properly, it can result in increased risk for fatality. Currently, there are 3 therapies that are FDA-approved and available to patients with aquaporin-4 (AQP4) antibody positive NMOSD.
One individual who was diagnosed with seronegative NMOSD is Sumaira Ahmed, the founder and executive director of the Sumaira Foundation.1 She had her diagnosis while in her early 20s, back in the summer of 2014. Ahmed built the foundation as a dedication to increasing the global awareness of NMOSD and myelin oligodendrocyte glycoprotein antibody associated disorder (MOGAD). The organization’s main goal is to inspire and establish communities that support patients and their caregivers, as well as fund research for NMOSD.
In a recent interview with NeurologyLive®, Ahmed spoke about the importance of the organization’s platform, having a global approach, and reaching patients who may not have the access to the same level of care that she had. Several foundations in the clinical community support research in many different forms. She expressed how her organization is supporting and the furthering of understanding the disease through their research initiatives.