Fighting ALS with Joy: The Mission of the Fight ALS for Jess Foundation

Diagnosed with ALS in 2020, Jessica "Jessi" Story chose a path of resilience and hope. With her best friend and advocate, Rebecca Church, Jessi launched the Fight ALS for Jess Foundation, a nonprofit that supports families affected by this devastating disease.

"Accessibility is a human right," Jessi says. "Families impacted by ALS deserve to be supported, educated, and uplifted. Our foundation is about ensuring no one feels alone in this fight."

Jessi's ALS diagnosis marked the start of a mission to spread awareness and help others navigate the disease's challenges. Rebecca recalls the resolve they shared: "When Jessi received her diagnosis, it was devastating, but we decided together that this would not define her. She said, 'I'm going to live my life. I'm going to choose joy every single day.' And she meant it."

ALS, a neurodegenerative disease, gradually takes away the ability to move, speak, and even breathe. Despite the average life expectancy of two to four years, Jessi has surpassed this grim prognosis, choosing joy as her guiding principle.

"Joy is not a circumstance; it's a decision," Jessi explains. "Yes, ALS is real, and it's tough, but I have so much to live for. I'm lucky to have incredible friends, caregivers, and a community that loves me unconditionally. I'm lucky to know Jesus as my Savior."

March 2025 will mark the fifth anniversary of Jessi's diagnosis, a milestone of both reflection and gratitude. "I always celebrate the day for the simple fact that I am still living," Jessi shares. "It's hard, and the emotions are overwhelming at times. BUT GOD. He is good, and I'll keep thanking Him for His goodness."

The Fight ALS for Jess Foundation also focuses on raising awareness about ALS's growing prevalence. "Every 90 minutes, someone is diagnosed with ALS, and every 90 minutes, someone loses their battle," Rebecca explains. "These numbers are staggering and are only expected to rise."

In late 2024, the foundation hosted its first community event: the Inaugural FXBG Walk to Fight ALS for Jess. The walk drew supporters together to celebrate Jessi's strength and raise funds for the cause. "Jessi is one of the strongest women I know," Rebecca says. This walk and these people mean everything. Showing up for others in their battles truly matters."

An official website is currently in the works, but for now, people can follow their Facebook page (Fight ALS for Jess Foundation) for more information and ways to support.

Through the foundation, Jessi and Rebecca are turning hardship into hope, ensuring no family faces ALS alone. "Together, we can make a difference," Jessi says. "We can bring hope, love, and light to those who need it most."