Thank you, California.
Thank you for your empathy and your commitment to patients and families in the Golden State suffering with ALS, or amyotrophic lateral sclerosis, a progressive neurological disease often called Lou Gehrig’s Disease.
Specifically, our biggest of thanks goes to Gov. Newsom, California’s legislature and Department of Health officials for approving $15 million over the next five years for the “Wraparound Model of Care Funding.”
The initial funding grant of $9 million over the course of the last three years expired this past June. This original funding has been game changing for the treatment of ALS in the state and the Greater San Diego Chapter.
We are truly grateful the additional funding 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 more than 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.
ALS is a neurodegenerative disease that results in the death of nerve cells in the brain and spinal cord, causing the muscles in the body to gradually weaken. This leads to loss of limb function, difficulty breathing, paralysis, and eventually death. There is no known cause or cure for ALS.
While drugs are not as effective as we hoped and as 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 Associations’ 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 treatment possible, but gives hope and life to thousands of patients and their loved ones across the entire state of California.
The Wraparound Model of Care is the combined effort of ALS Association Care Services working in close collaboration with Certified Treatment Centers of Excellence across the state to deliver robust home, community and multi-disciplinary clinic-based services and support, including: Professional community and home-based care management services; Information and referral services; Support groups for people with ALS and their caregivers; Community education programs; Loans of durable medical equipment and augmentative communication devices; Community Outreach and Awareness Activities.
“The ALS Association Greater San Diego Chapter & UCSD ALS Certified Center of Excellence have been instrumental in my well-being 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.”
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 2,400 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.