Thank you, California

By Steve Becvar, Amy Sugimoto and Natalie Villegas

Thank you for your empathy, and your commitment to patients and families in the Golden State suffering with ALS. Specifically, the biggest of thanks to Gov. Newsom, California’s legislature and Department of Health officials for approving $15 million over the next five years for Wraparound Model of Care Funding.  The initial funding grant, $9 million over the course of the last three years, expired this June. This original funding has been game changing for the treatment of ALS in the State, and the ALS Association’s four chapters serving California are truly grateful it will continue to provide the means to make a difference for thousands of people living with the disease.

Why is it so important? The ALS Association has been battling with the disease for over three decades. Finding cures for all forms of ALS is our ultimate goal. As it currently stands, there is no known cause or cure for ALS. Neither of the two FDA-approved drugs for treatment of the disease has been effective at extending life for a person diagnosed with ALS for more than two to four months. While these drugs are not as effective as we hoped and we continue to invest in new therapies, our research has shown that ALS is more responsive to something else, and that thing is—essentially—community.

Today, the only way to meaningfully extend the length and quality of life for a person with ALS is to take a proactive approach, focusing on the evidence-based wraparound care model provided by The ALS Association’s four California Chapters. In this way, it is possible to anticipate and manage the effects of disease progression, while also reducing the costs associated with managing the disease, which can exceed $250,000 annually for families living with ALS. The ALS Wraparound Model of Care Funding not only makes this treatment possible, but gives hope and life to thousands of patients and their loved ones across the entire state of California.

“The ALS Association Greater San Diego Chapter & UCSD ALS Certified Center of Excellence have been instrumental in my wellbeing to live life to the fullest ‘’ said ALS patient Jessy Ybarra, “This funding is critical to improve the lives of those living with and affected by ALS.”

A life-giving act, implemented in the most sensible way. ALS knows no racial, ethnic, geographic, or socioeconomic boundaries, affecting both men and women. The disease afflicts indiscriminately; we must do everything we can to make treatment accessible to every Californian in need. In funding this crucial model, measures were implemented to ensure that distribution of funds to an organization working with ALS families are in proportion to the population of Californians it serves. The allocations of $2,111,566 to the Golden West Chapter, $316,336 to the Greater Sacramento Chapter, $298,164 to the San Diego Chapter and $273,934 to the Orange County Chapter mean greater funding and support for patients and families who so desperately need it. The equitable allocation of funds to our state chapters and increased transparency with regard to how they’re used are good-sense measures in an effort this critical.  This disease is responsive to community, the better we are at working together, the greater our chances of beating it.

Ultimately, no single line item can tell the whole story. It’s about understanding the struggle for roughly 2400 Californians living with ALS, and about giving the gift of life and hope. It’s about coming together to do the very best we can today, on the way to finding cures tomorrow. Thank you, California.

Steve Becvar is the Executive Director at the ALS Association Greater San Diego Chapter.

Amy Sugimoto is the Executive Director at the ALS Association Greater Sacramento Chapter.

Natalie Villegas is the Executive Director at the ALS Association Orange County Chapter.