A Mother’s Mission: Nancy Frates and the Fight to End ALS

Introducing the Veronica Beard x CFDA Creative Futures Scholarship

Imagine your healthy, athletic child receiving a devastating diagnosis—one without a cure. For Nancy Frates, that moment came when her son, Peter, a star baseball player, was diagnosed with ALS at just 27 years old. What began as an unimaginable heartbreak became a mother’s lifelong mission to bring hope and resources to those living with the disease—a mission that ultimately led her family to establish The Peter Frates ALS Foundation, our current VB Gives Back Partner.    

When Peter received his diagnosis, Nancy felt angry, hopeless. But Peter refused to let despair define him. “On the night of his diagnosis, he spoke with clarity and purpose,” Nancy says. “He set a vision rooted in compassion and humility, telling us that we were going to get to work—not for his sake, but for those who would come after him.” His strength and his unshakable belief in hope became the foundation of everything Nancy would go on to do.  

From Heartbreak to Hope

In the months following Peter’s diagnosis, Nancy and her family immersed themselves in the ALS community—attending events and panels, determined to turn heartbreak into action. She began sharing her family’s story so the world—not just the medical community—could understand the human side of ALS.  

  

That commitment to visibility set the stage for one of the most viral social movements of our time: the ALS Ice Bucket Challenge. When Peter decided to amplify a small local campaign in 2014, it ignited a wave of global participation and awareness. “It was the tipping point—there was no hope before that, and now there is,” she says. “If you give people hope, they will fight.”  

Carrying the Work Forward

Since 2014, Nancy has continued to lead with that same passion. From giving a compelling TED talk to testifying before the FDA and meeting with pharmaceutical companies, her advocacy has contributed to real, measurable change. Researchers have identified four new ALS-related genes, established new therapy targets, and developed FDA guidelines to fast-track treatments. Most importantly, there are two new FDA approved therapies available to patients, something that didn’t exist when Peter was diagnosed.  

  

“Today, ALS awareness, momentum, and funding are at the highest levels they’ve ever been,” Nancy says. “But we still need people to stay with us—to keep fighting alongside the ALS community until there’s a cure.” 

The Foundation and Peter’s Legacy

As Peter’s journey was coming to an end, Nancy founded The Peter Frates ALS Foundation to carry forward his commitment to helping others. “We drew from our own experience—the financial and emotional challenges of providing Pete with high-quality care at home—to shape our mission,” she explains. Because home healthcare is rarely covered by insurance or government assistance, the Foundation helps families shoulder those staggering costs. 

 

Peter passed away in 2019 at the age of 34, but his legacy—and Nancy’s tireless fight to end ALS—live on. Together, Nancy and the Foundation continue to ensure that until there is a cure, those with ALS can live their lives to the fullest—with dignity, comfort, and hope: “Our work is a continuation of Pete’s vision, grounded in love and dedicated to those who follow.” 

Now through the end of December, VB Gives Back will be donating a portion of all VeronicaBeard.com orders to The Peter Frates ALS Foundation, a nonprofit dedicated to assisting ALS patients with the financial burden of home health care. Join us in ensuring they can remain where they belong: at home, with dignity, surrounded by their loved ones.

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