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

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."

Democratic Caucus Chair Rick Chavez Zbur Applauds Governor Newsom’s Special Session to Uphold & Protect California Values

SACRAMENTO, CA—Assemblymember Rick Chavez Zbur (D-Hollywood) announced today his gratitude and commendation for Governor Gavin Newsom’s decision to convene a special session of the Legislature to bolster the state’s legal defenses and protect California values, including fundamental civil rights, reproductive freedom, climate action, immigrant families, and more.