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Posted by: The Sumaira Foundation in News & Announcements
The Sumaira Foundation (TSF) is delighted to welcome Taylor Macey to our leadership team as Director of Patient Engagement.
In her new role, Taylor will lead the strategy and execution of TSF’s patient-centered programs, including events, webinars, storytelling and communications. This role fosters meaningful engagement across patients, caregivers, clinicians and partners, while supporting strategic collaborations, partnerships and the organization’s growth within the rare neuroimmune community.
Taylor experienced her initial symptoms in 2019 at age 25, shortly after giving birth to her second child. The sudden rush of scans, appointments and uncertainty was overwhelming as she faced how this diagnosis could impact both her life and that of her young children.
With the support of her community, friends and family, Taylor was able to secure an appointment with a specialist who diagnosed her with neuromyelitis optica. That clarity gave her a sense of direction and a path forward. She soon began treatment and felt driven to immerse herself in the world of rare neuroimmune disease. Read her Voices of NMO story here: The Brightest Days Are Ahead
Over the next five years, Taylor dedicated herself to producing a weekly podcast, Brain Diet, where she shared tools and strategies for navigating life with autoimmune disease and chronic illness. It was through this platform that she first connected with Sumaira – a meaningful relationship that would grow into impactful patient support and advocacy around the world. Listen to the episode here: Getting a Rare Disease (NMOSD) and Changing the World with Sumaira Ahmed
In 2025, Taylor joined the Foundation as a Utah Ambassador, enthusiastically committing to the mission of shedding light on rare neuroimmune diseases. She is now honored to help amplify community voices and bring hope to those carrying the weight of living with a rare condition.
Please join us in congratulating Taylor on this exciting next endeavor!
