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Fueled by 15 years of ALS advocacy, California renews funding to the Golden West Chapter for the ALS community

The State of California renewed multi-year funding for our wraparound model of care that helps people live longer and better with ALS, and also accelerates the search for treatments and cures.

Governor Gavin Newsom recently signed the 2021 California Budget Act, which included continued statewide funding for the care and support of the ALS community. In conjunction with the Department of Health, California’s legislature committed to the renewal of $3 million in annual appropriations to the Golden West Chapter, to support vital programs and multidisciplinary ALS care across California. This time, the annual funding was extended to five years, for a total of $15 million.

“We are grateful to Governor Newsom and the California Legislature for renewing and expanding critical funding for our wraparound model of care services for people living with ALS,” said Fred Fisher, President & CEO of the Golden West Chapter. ”Our proven model ensures access to vital care services free-of-charge to people with ALS and their families, empowers members of the ALS community to participate in promoting important public policy initiatives, and accelerates scientific discovery.”

The genesis of this important public policy initiative began more than 15 years ago and was made possible through the continued work of dedicated Golden West Chapter ALS advocates, staff, and supporters.

After losing his father to ALS, Dean Rasmussen put his grief into action. Fondly referred to as The ALS Association’s “Godfather of Advocacy,” Dean served to catalyze the creation of the Association’s federal Public Policy program, which seeded the Association’s efforts nationally with the Department of Defense and Centers for Disease Control. Dean also launched the Golden West Chapter’s Advocacy program in California. His wife, Kathleen, served as the Chapter’s Board Chair for many years, and remains a key supporter of our mission to advance the search for effective treatments and cures for ALS.

Jim Barber was a successful attorney for 30 years before his ALS diagnosis. Jim was also a Vietnam War veteran and was deeply committed to doing all that he could to raise awareness and support for the ALS community. Jim became an advisory trustee of the Golden West Chapter and was invited to serve as the Co-Chair of the Chapter’s Advocacy Committee along with Jared Gill. Jared became a volunteer after losing his father, Johnny Gill, to ALS in 2000. Jared and his family helped to establish the John Gill Central Coast Support Group, which provides monthly services to people living with ALS and their families in the Monterey Bay area.

Jim, Jared, and Dean, along with Chapter volunteer leaders and staff, decided that the Chapter needed “boots-on-the-ground” support for advocacy efforts in Sacramento. In 2007, they selected Fred Noteware, a deeply-respected lobbyist in the State Capitol, to work with the Chapter. Together, their efforts on behalf of the ALS community led to several victories, including the passage of two important bills, which were sponsored by the Pro Tem of the CA Senate, Darryl Steinberg.

The first was SB 1502, which established the ALS/Lou Gehrig’s Disease Research Fund as part of the California Tax Check-off Program, and raised nearly $700,000 for ALS research. With this funding for ALS research projects secured, the Golden West Chapter launched the California ALS Research Summit, bringing world renowned scientists together to inform how that new funding should be deployed to advance the best scientific ideas. The second was SB 1503, the standard of care bill, which acknowledged The ALS Association’s Certified Treatment Centers of Excellence as the gold standard for ALS care and treatment and gave these Centers the designation of a specialty care center in the Health and Safety Code. This would prove instrumental in the Golden West Chapter’s efforts to eventually secure state funding.

In 2017 Rusty Selix, a professional advocate in California who worked tirelessly on important issues on behalf of people in the mental health community for over 30 years, was diagnosed with ALS. Rusty’s extensive knowledge of healthcare legislation had put him at the center of some of the most important public policy milestones in patient care advocacy, and included significant career triumphs, like Proposition 63 which generates nearly $2 billion annually to benefit California’s public mental health systems. Rusty began attending The ALS Association Certified Centers of Excellence at the ALS Treatment and Research Center at UCSF and also at the Forbes Norris Center at California Pacific Medical Center. When he learned that the multidisciplinary model of care that he experienced was funded by the generous donors who support the Golden West Chapter, and not by insurance or state funding, he immediately called the Chapter’s President and CEO, Fred Fisher, to express his personal gratitude.

Fred Fisher then connected Rusty with Fred Noteware, whom Rusty had worked with previously in Sacramento, and the three met to discuss ways to help improve care services for people living with ALS in California. They focused on the importance of the Golden West Chapter’s wraparound model of care, which combines clinical and community-based services and support. They determined that they could navigate the state budget process on behalf of the ALS community. Throughout the first half of 2018, Fred Noteware worked to coordinate requests for support before securing the opportunity to present to the Assembly Budget Committee No. 1 on Health and Human Services.

On April 30, 2018, Rusty Selix, Fred Noteware, and Fred Fisher went to Sacramento to testify for the Committee. These dedicated ALS advocates urged state officials to support the Chapter’s evidence-based wraparound care model of care. You can watch their full testimony below.

On June 27, 2018, California’s then Governor Brown signed budget bill SB 840, declaring it a “milestone.” The bill dedicated $9 million in appropriations over the course of three years in support of our model of care for California’s ALS community and positioned the Golden West Chapter to serve as the administrator for statewide distribution of funds annually. It was an important recognition of the diverse and ongoing needs of people living with ALS and their families, acknowledgment of the work of the Golden West Chapter, and an unprecedented commitment of state funding to support essential programs and services for families facing this devastating disease.

Since this critical state funding was approved, the Golden West Chapter has worked collaboratively with 8 Certified Treatment Centers of Excellence and 19 affiliated clinics throughout California to deliver robust services and support at no charge, which include:

  1. Professional care management services
  2. Information and referral services for families facing ALS
  3. Support groups for people with ALS and their loved ones
  4. Community education programs
  5. Loans of durable medical equipment and augmentative communication devices
  6. Chapter community outreach and ALS awareness and advocacy activities
  7. Access to Multidisciplinary clinical care and research opportunities

Since 2018, the Golden West Chapter has been providing the State of California with frequent updates about services provided to Californians living with ALS and building relationships with the leaders in the House and Assembly to garner support for renewed funding. As the pandemic shut down in-person activities at the state capitol last year, Fred Fisher and Fred Noteware continued to meet remotely with many representatives to educate state health and elected officials about the great needs of the ALS community and the unduplicated services underwritten by public funding.

The culmination of the work of these ALS advocates led us to this milestone, and their support of the ALS community continues throughout the Golden West Chapter. We will forever mourn the loss of Jim Barber to ALS in 2016, who was honored posthumously with an ALS Association Hero Award for his many contributions. Jim’s wife, Cheryl, and many family members continue his efforts through the Barber ALS Research Award, presented annually at the California ALS Research Summit. Jared Gill currently serves as Golden West Chapter Board Secretary and is an active volunteer through the Walk to Defeat ALS. Dean Rasmussen now serves as an emeritus trustee of the National ALS Association; Founder and emeritus Chair of The ALS Association Federal Advocacy Committee; a Golden West Chapter Advisory Trustee and an ongoing supporter of advocacy efforts in California. Kathleen Rasmussen currently serves on the Golden West Chapter’s Board and leads Chapter fundraising activities. Dean and Kathleen recently created the Golden West Chapter’s Rasmussen Advocate of the Year Award, which was first presented to Rusty Selix, who sadly lost his battle with ALS in 2019. Fred Noteware has also been recognized as a Rasmussen Advocate of the Year, and continues to represent the individuals and families facing ALS in California; he played an integral role in helping to make the funding in support of the ALS community through the 2021 California Budget Act a reality.

We deeply appreciate Dean, Kathleen, Jim, Jared, Rusty, and Fred, and all that they have accomplished for those affected by ALS. We are also extremely grateful to every ALS advocate who joined our efforts to make this funding possible. The Golden West Chapter remains firmly committed to elevating the issues facing the ALS community and tackling those issues in Sacramento with our steadfast legislative partners. Together, our advocacy will provide crucial help and pave the way for improved access to care and accelerate the search for effective treatments and cures.

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