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Celebrating the Life and Legacy of Health Care Activist Ady Barkan

Ady Barkan sings "This Land Is Your Land" in the rotunda of the Russell Senate Office Building with his son Carl, wife Rachael and friends. Photo by Jia-Ching Chen.

A true hero and activist personified, Ady Barkan made an enduring impact on the ALS community that will live on through his significant contributions to healthcare reform.

Once described as “the most powerful activist in America” by Politico, Ady, his family, and caregivers became friends with Golden West during his ALS journey. His dedication to ensuring access to care and resources for those living with ALS and caregivers will continue to inspire everything we do.

It was in 2016, just after the birth of his son, Ady received his devastating ALS diagnosis. He shared in interviews that the diagnosis made his world fall apart, and in the years since Ady fought fearlessly to change the nation’s broken healthcare systems and to improve healthcare access for people everywhere – including those living with ALS.

The founder and Co-Executive Director of the Be A Hero Fund, Ady used his platform to advocate for universal health care – raising awareness and funds for health care reform to ensure access and dignity for all. Just recently, he leveraged his incredible reach to raise money for ALS Golden West and in the process amplified the stories of caregivers who dedicate their lives to people like Ady, so they can in turn, live full lives despite their diagnosis.

In addition to his countless contributions to improve the lives of people living with ALS, Ady raised more than $1,200 for Golden West this past year. The funds provided critical caregiver support to individuals and families living with ALS in the Santa Barbara and Central Coast region.

Ady died from ALS on November 1, 2023, at the age of 39. ALS Golden West shares sorrow in losing Ady and honors him for challenging the status quo, advocating for change, and epitomizing strength. Our hearts go out to Ady’s family and loved ones.

To learn more about Ady and his extraordinary legacy, please visit the following articles and interviews:

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