Highlighting Research Progress and Upcoming NMOSD Clinical Trial: Sumaira Ahmed

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"We've really had a phenomenal decade. Every time I go to these conferences, it's wonderful to see all of the work—the posters, the abstracts, the presentations—but I always say we should also be getting together to celebrate all of what's going on, because so much has happened over the last decade."

During the 2025 European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) Congress, held September 24-26, in Barcelona, Spain, The Sumaira Foundation (TSF), an advocacy organization dedicated to those living with neuromyelitis optica spectrum disorder (NMOSD), hosted its Research Update & Award Ceremony at Casa Llotja de Mar. The event included updates on ongoing research, recognition of contributions in neurology, and opportunities for networking among stakeholders. TSF also announced Vanda A. Lennon, MD, PhD, director of the Neuroimmunology Research Laboratory at Mayo Clinic, as the recipient of its 2025 Global Rare Trailblazer Award.

At the research update portion of the event, TSF presented its major international research initiative, funded with a $9 million PCORI award, that will assess the head-to-head clinical efficacy of both approved and off-label options for NMOSD like rituximab. The current FDA-approved therapies for NMOSD include satralizumab (Enspryng; Genentech), eculizumab (Soliris; Alexion), ravulizumab (Ultomiris; Alexion), and inebilizumab (Uplizna; Amgen). Despite each of these therapies demonstrating efficacy in reducing relapse risk, limited direct comparative data exists to guide personalized treatment decisions, which is an evidence gap the TSF research initiative seeks to address.¹

In an interview with NeurologyLive^® at ECTRIMS 2025, Sumaira Ahmed, NMOSD patient advocate and executive director of TSF, shared highlights from TSF’s Research Update & Award Ceremony. She emphasized that the event brought together a diverse group of attendees, including clinicians, patients, advocates, and industry representatives. She noted that awards were presented to recognize significant contributions to the field of NMOSD, and updates were shared on major funding efforts supporting upcoming studies. Additionally, she talked about the value of in-person interactions for collaboration and knowledge sharing at conferences like ECTRIMS.

Click here for more coverage of ECTRIMS 2025.

REFERENCES
1. PCORI. A Comparative Clinical Effectiveness Trial of Rituximab versus Ravulizumab, Inebilizumab, Satralizumab and Eculizumab To Prevent Relapses in Neuromyelitis Optica Spectrum Disorder. Accessed June 4, 2025. https://www.pcori.org/research-results/2025/immunotherapies-prevent-relapse-neuromyelitis-optica-spectrum-disorder