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Opinion: California's Rare Disease Council Will Transform Care for People with ALS

Source: Times of San Diego

One of the most powerful voices championing the RDAC bill was California state Assemblyman Rick Chavez Zbur, who has a personal connection to ALS. In advocating for the council, he recalled his late sister Jackie’s battle with the disease, describing her bravery through profound challenges:

"ALS is one of the cruelest conditions there is," said Zbur. "It's a disease that results in a gradual shutdown of one's body. Over two years, Jackie lost her ability to move her legs, then lost strength in her arms, and ultimately lost her ability to swallow and even communicate. That period of her life literally haunts me, as I watched her struggle, but with so much bravery and incredible dignity."