California’s budget for FY 2021-2022, recently signed by its governor, Gavin Newsom, includes $15 million in funding for the care and treatment of people living with ALS. It also includes $8.4 million to fund Parkinson’s disease data collection and research, according to separate news releases.

Wraparound Model of Care

Four California chapters of The ALS Association will share the $15 million in funds equitably to deliver a wraparound model of care to the state’s ALS community. The funding was approved over the next 5 years. The initial funding grant, $9 million over the course of the last three years, expired in June.

The new allocation ensures that patients and families living with ALS across the state of California receive the specialized medical care needed to extend and improve quality of life, a media release from The ALS Association explains.

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:

  1. Professional community and home-based care management services
  2. Information and referral services
  3. Support groups for people with ALS and their caregivers
  4. Community education programs
  5. Loans of durable medical equipment and augmentative communication devices
  6. Community Outreach and Awareness Activities

“We thank Governor Newsom and the California Legislature for approving continued funding for care services for people living with ALS, to be provided by the California Department of Public Health. Funding at the local level, where care is delivered, is critical to support our urgent work to help people with ALS live longer, live better and to prevent new cases of ALS as we continue the quest for a cure. 

“This funding grant will serve all Californians diagnosed with ALS and as well as their families equitably with a model of care that can change the trajectory of this disease and help us achieve our mission of making ALS a livable disease by 2030.”

— Calaneet Balas, President and CEO of The ALS Association

Accelerate Parkinson’s Data Collection

The recently signed budget also includes $8.4 million to fund the California Parkinson’s Disease Registry (CPDR) and to expand it to other neurodegenerative diseases over the next 4 years. The registry’s goal is to acquire, record and analyze epidemiological data of the incidence and prevalence of disease that can identify Parkinson’s “hot spots” throughout the state that will aid scientists in their work toward finding a cure, a media release from The Michael J. Fox Foundation for Parkinson’s Research explains.

“We need collaborative investments in Parkinson’s to move the dial on research and find a cure. Public policy initiatives like this registry can have a direct and lasting impact on how the research community does its work — data collection is absolutely critical so that researchers can view the full picture of a disease.”

— Ted Thompson, JD, MJFF’s senior vice president of public policy

Originally enacted in 2004, the CPDR collects health information on individual cases of Parkinson’s disease (PD) in California so that researchers can identify patterns and trends across a population diverse in race, ethnicity, socioeconomic status and history of exposure to occupational and environmental toxins. In 2017, the state legislature enacted new legislation and provided funding for the first time to build out a modern, electronic Parkinson’s patient registry.

Through this year’s renewed funding, the CPDR will now expand its efforts to gather data that can inform research around PD and other neurological conditions. Data collected for the CPDR also will inform the national Parkinson’s data collection effort at the U.S. Centers for Disease Control and Prevention.

The $8.4-million expansion funding comes on the heels of a commitment of $400,000 in bridge funding from MJFF to keep the registry alive as the state navigated its budget during the COVID-19 pandemic. The Foundation also organized a neurological disease coalition to encourage expansion of the data collection effort to other neurodegenerative diseases, the release continues.

[Source(s): The ALS Association, The Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]

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