Florence resident to lead community walk raising awareness for rare disease

Hayley White (Contributed, 256 Today)

A local resident is turning her personal health journey into a community-wide effort to raise awareness and support research for a rare, incurable condition.

Haley White, who lives with Charcot-Marie-Tooth disease, will lead the Florence Walk 4 CMT on April 25 at McFarland Park. The event begins at 10 a.m. and is open to participants of all ages and abilities.

White is among an estimated 135,000 people in the United States living with the progressive neuromuscular disease, which causes muscle weakness, impaired balance and nerve degeneration. Organizers say roughly 100 people in the Florence–Muscle Shoals area and more than 2,000 statewide are affected.

The walk features a half-mile loop, with participants encouraged to walk any distance they are comfortable completing. Proceeds will benefit the Charcot-Marie-Tooth Association, supporting ongoing research efforts and programs aimed at improving quality of life for those living with the condition.

According to event organizers, many individuals with Charcot-Marie-Tooth disease face delayed diagnoses and limited treatment options, underscoring the importance of awareness and funding for research.

The April 25 event is part of a broader national initiative led by the association to accelerate the development of therapies through its research programs. The organization has invested more than $33 million in research since 2008.

White will lead the walk and share her experience living with the disease and her efforts to build local support.

Community members interested in participating can register online through the CMTA event page.

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