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TSF organizes first-ever American Academy of Neurology conference patient panel

Posted by: The Sumaira Foundation in News & Announcements

Dr. Grace Gombolay, Sumaira Ahmed, Nell Choi, Alanna Yee, Nakeshia Nickerson and Tara Zier.

On Saturday, July 20, 2024, the American Academy of Neurology (AAN) marked a historic milestone with the debut of its first-ever patient panel at an AAN meeting. Organized by The Sumaira Foundation (TSF), this ground-breaking event, titled Living with Rare Neuroimmune Conditions: Patient Views & Perspectives, provided attendees of the 2024 AAN Summer Conference: Autoimmune Neurology in Atlanta with the opportunity to hear firsthand from a distinguished and diverse group of patient advocates.

The panel was moderated by Sumaira Ahmed, Founder and Executive Director of The Sumaira Foundation, who facilitated a rich dialogue among patients living with:

• Alanna Yee, autoimmune encephalitis/AE
• Nakeshia Nickerson, myelin oligodendrocyte glycoprotein antibody-associated disorder/MOGAD
• Nell Choi, neuromyelitis optica spectrum disorder/NMOSD
• Tara Zier, stiff person syndrome/SPS

Panelists provided insight into the challenges they have faced, the resilience they have developed, and the hope they hold for the future of rare disease patient care and outcomes. We are proud of their powerful expressions of vulnerability, courage, and strength, which earned a standing ovation from the audience of researchers, clinicians, allied healthcare providers, and industry partners.

The success of the event not only underscores the critical importance of integrating patient voices into academic settings but also highlights that significant advancements in medical R&D are accelerated by actively listening to and engaging with those who live with the impact of these conditions every day. As we reflect on this milestone, we celebrate the collective effort that made it possible and look forward to continuing our work to amplify patient voices across the neuroimmunology landscape.

We have walked away from AAN feeling energized and inspired, optimistic that this panel will set a precedent for future medical conferences and pave the way for a more inclusive approach in research. Thank you to Dr. Stacey Clardy and Dr. Grace Gombolay for facilitating the occasion, and thank you to our fearless patient panelists for your transformative advocacy!

This panel was made possible with support from Alexion, Amgen and UCB.