California has made an important stride in the fight against rare diseases by becoming the 29th state to establish a Rare Disease Advisory Council (RDAC). Governor Gavin Newsom’s recent signing of the RDAC bill into law represents a tremendous victory for the rare disease community, including people living with ALS.
The RDAC is designed to bring together patients, policymakers, and stakeholders in a collaborative effort to advance research, treatments, and policies that will improve the lives of those impacted by rare diseases, including ALS.
The passage of this legislation was made possible by the tireless efforts of the ALS Association and advocates in California. Key actions included state advocacy days, where ALS representatives and advocates met with legislators to stress the RDAC’s importance for the rare disease community.
The Association also submitted written testimonies and coalition letters supporting the bill and mobilized grassroots advocacy, urging supporters to contact legislators. After the bill passed, 7,779 advocates were asked to call on Governor Newsom to sign it into law.
These efforts, coupled with unwavering dedication from other patient advocates, ensured the voices of those affected by rare diseases were heard in Sacramento.
One of the most heartfelt and powerful voices in support of the RDAC bill was California State Assemblyman Rick Chavez Zbur, whose personal connection to ALS deeply shaped his commitment to the effort.
As a proud member of the California Rare Disease Legislative Caucus, Zbur has long been a champion of patient care and rare disease advocacy. His involvement as the bill’s author and its passage is a testament to his drive to honor the memory of his sister, Jackie, who tragically lost her battle with ALS in 2020.
Reflecting on Jackie’s life, Zbur shared the story of her bravery and strength in the face of ALS. Her diagnosis and subsequent passing inspired him to pursue public service.
The creation of California's RDAC marks a potential turning point in how the state will approach rare disease advocacy, education, and policy. With over 7,000 known rare diseases affecting more than 30 million Americans, there is a clear need for greater collaboration among medical professionals, researchers, patients, and legislators. The RDAC will serve as a vital forum where stakeholders can come together to share knowledge, improve access to care resources, and advance innovative treatments.
“For the ALS community, the passage of this bill represents a critical step forward in the ongoing fight to find a cure for ALS and to improve the lives of those living with the disease everywhere,” said Kelly Goss, Managing Director, Advocacy. “With the addition of California, the hope is that these councils can work in tandem, sharing best practices and leveraging resources to enhance the quality of life for people living with rare diseases across the nation.”
As California begins the work of implementing its RDAC, advocates, policymakers, and healthcare providers must remain vigilant and engaged to ensure the council achieves its full potential. This is not just a policy milestone, but a symbol of the rare disease community's resilience and determination.
Reflecting on his sister Jackie, Zbur considers the passage of the RDAC as an important victory for the countless families impacted by ALS and other rare diseases. "I would like to think she’s rooting for us, hoping that we will work toward a better future for people who are ill, living with disabilities, and wish only to age with dignity,” he said.
Special thanks to California State Assemblyman Rick Chavez Zbur and all the ALS advocates who worked so hard to make this bill a reality.
In Memory of My Sister, Jackie
by Assembly Member Rick Chavez Zbur (D-West Hollywood/Santa Monica)
Family and friends always described my sister Jackie as warm and caring, energetic and fun loving, with a zest for life and a thirst for experiencing the wonders of our world. That’s why watching her suffer with and eventually die from ALS was so incredibly painful. On the evening of Thursday, September 3, 2020, Jacqueline Marie Zbur passed away, surrounded by her loving family.
She was my very best friend and the first person I came out to as a gay man, almost a year before I came out to anyone else, because she was the person I trusted most and felt safe with. While all my siblings are especially close, and I love my brother John and my sister JoAnn more than I can ever say, we all realized after her passing that each of us considered her to be our very best friend. She was that special.
ALS is one of the cruelest conditions there is. It’s a disease that results in a gradual shut down of one’s body. Over two years, Jackie lost her ability to move her legs, and then lost strength in her arms, and ultimately lost her ability to swallow (necessitating a feeding tube) and even communicate because her speech was so slurred. That period of her life literally haunts me, as I watched her struggle, but with so much bravery and incredible dignity.
Even when she knew her time was short, Jackie was thinking about others. In fact, Jackie is the main reason I serve in the California State Assembly today. Nine months before she passed, as she was reviewing her life and whether she had done enough to pursue her dreams, she made me promise that I would seek public service in some capacity, because she believed that was what I was destined to do.
I believe that Jackie is looking down on all of us, watching with a hopeful and loving heart. I would like to think she’s rooting for us, hoping that we will work toward a better future for people who are ill, living with disabilities, and wish only to age with dignity and respect with the help of home caregivers who are paid what they deserve. She inspires me to be a better person, and to work to fix this broken social safety net. I love you Jackie, and miss you every day.
To learn more about how you can become an advocate and join the fight to help the ALS community, visit our website HERE.
To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.
Join the conversation. Please comment below.