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

After fourteen years of supporting ALS families, I know firsthand the relentless challenges of living with ALS. For families affected by this rare, fatal disease, the journey is grueling — not only because of the diagnosis itself but due to a healthcare system that often feels fragmented and insufficient.

That’s why California’s recent decision to create a Rare Disease Advisory Council is a milestone that brings new hope to people living with ALS and their families. California’s RDAC will bring patients, caregivers, healthcare professionals, and policymakers together to tackle the unique challenges of rare diseases.

This council will advocate for increased awareness, improve treatment options, and build a stronger support system for those living with conditions like ALS. By focusing on the real needs of rare disease patients, the RDAC promises to help close gaps in care. 

ALS, like many rare diseases, affects a small fraction of the population, which has historically led to limited resources for research and care. Most families face long, stressful journeys toward diagnosis, compounded by limited public awareness and medical knowledge. But the RDAC has the potential to change this by identifying barriers to care, sharing resources that can improve quality of life, and pushing for research funding aimed at finding causes and cures. 

The council’s focus on coordinated care is a crucial step. Currently, families affected by ALS must navigate a confusing maze of doctors, specialists, and agencies without cohesive support. The RDAC could help create a streamlined approach to ensure that patients get the comprehensive, ongoing care they need — from initial diagnosis to daily support. 

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.” 

Zbur’s commitment, driven by Jackie’s memory, underscores the deeply personal nature of this cause. The staff and volunteers of the ALS Association were proud to join Zbur and coalition partners led by the National Organization for Rare Disorders in advocating for the RDAC. 

The RDAC is not only a legislative win, but a lifeline for those facing rare diseases. For people living with ALS, it brings the possibility of a healthcare system that prioritizes coordinated, compassionate, and comprehensive care.

The council’s creation marks a hopeful step forward in a long journey toward a better, more inclusive future for those living with ALS and other rare conditions. 

Nancy M. Wakefield is managing director of care services for the ALS Association in California.