Naperville Family’s Fight to Cure Son’s Ultra-Rare SPG4 Disease Earns Mayor’s Backing, Sparks Global

On August 23, 2026, the Naperville community rallied together for the third annual 5K Run/Walk/Roll and Virtual event turning into a global event to support a local family’s fight against SPG4, an ultra-rare, progressive neurodegenerative disease with no known cure. First launched in 2023 with the backing of Naperville Mayor Scott Wehrli, the event drew overwhelming local support, raising critical funds and awareness for medical research at leading institutions including UMass, Drexel, the University of Wisconsin, and Boston Children’s Hospital. 

While the family expressed deep gratitude for the support of Mayor Wehrli, his wife, and local sponsors, they emphasize that the race against time is far from over. SPG4 currently affects only 136 children worldwide, and existing resources are not yet enough to establish the necessary clinical pathways for treatment. Driven by renewed determination, the foundation remains steadfast in its mission to fund medical breakthroughs, believing every child fighting this condition deserves a brighter, healthier future. To learn more or join the movement, visit mauryakoduri.org.