The ALS Association today announced that California’s legislature, in conjunction with the California Department of Public Health has approved $15 million over the next five years for the wraparound model of care and treatment of ALS in the state.
The Suzanne Rogers Weber Memorial Fund honors Suzanne and her family’s gratitude for the Chapter’s assistance throughout her illness and her faith in a future world without ALS by supporting the Chapter’s Care Programs and ALS Research.
This fund is made possible through the generous support of Jill Spencer, in memory of her husband, Dan. Dan fought a courageous battle with ALS from 2013-2017.
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
“As heartbreaking as this disease is, I’ve met so many people who’ve been affected by it the last few years and they’re always upbeat, always positive, always saying they’re going to beat it,” Nola said.
Levels of a protein called neurofilament light chain (NfL) in the blood can identify those who might have neurodegenerative diseases such as Down’s syndrome dementia, motor neuron disease (ALS) and frontotemporal dementia, when clinical symptoms are not definitive.
Compared to sporadic or nonfamilial ALS, patients with C90rf72 are thought to have a more progressive disease course. Evidence shows the immune system in disease progression in patients with C90rf72, but little is known about which players are involved.