A special announcement from Golden West Leadership

As a valued member of our ALS community, we have important news to share with you on behalf of our Board of Directors and leadership team.

As of September 1, 2023, fifteen chapters, currently members of the ALS Association, will legally separate from the organization. This includes Golden West. These chapters represent nearly half of the patient community and more than half of the Certified Treatment Centers of Excellence and multidisciplinary specialty clinics for ALS in the U.S.

Why is this change occurring? Over the past two years, the national office of the ALS Association has worked to merge all 34 legally and financially separate corporate chapter entities across the country into a single organization. The ALS Association’s efforts to consolidate its historically independent members resulted in a dispute that was resolved last month.

After thoughtful deliberation and an assessment of the impact on the communities we serve, Golden West chose to maintain our corporate autonomy to ensure the highest standard and continuity of care for our ALS community while facilitating the search for effective prevention strategies, treatments and cures. Golden West is collaborating closely with the 14 other independent chapters separating from the ALS Association and will continue to maintain a robust network of information and resource sharing across the ALS community.

Our programs and services are unduplicated and highly valued by the community we serve. Below are highlights of some of the recent mission-critical accomplishments that you have made possible:

• Annually serving more than 2,000 people living with ALS as well as their many loved ones
  
• Providing professional care management services and programming to families facing ALS, including underwriting activities that benefit children and teens, hosting educational webinars, and offering more than 30 support groups each month
• Collaborating with 31 ALS clinic partners, including Certified Treatment Centers of Excellence and Recognized Treatment Centers, to provide seamless, high-quality multidisciplinary care and increase access to clinical trials
  
• Distributing hundreds of grants to people and families living with ALS for durable medical and communication equipment needs, transportation support, emergency assistance, and respite care
  
• Catalyzing research and innovation through partnerships, investments, and our California ALS Research Network
  
• Advocating for legislation and policies that benefit people with ALS and their loved ones
  
• Delivering vibrant events that engage our community and raise crucial funds and awareness
  
• Providing support and resources to hundreds of families who have lost a loved one to the disease

An organization with a grassroots origin story, Golden West is a trusted resource in California and Hawaii and is one of the largest ALS patient service organizations in the country. We have a decades-long track record of growth and evolution, and a deep dedication to evidence-based, data driven, client-centric approaches to program development and strategic initiatives. We also have a reputation for being a responsive, solutions-oriented thought leader and collaborative partner.

As we chart our next steps of growth and development in pursuit of our ultimate vision of ending ALS, we will provide timely and transparent updates, and we will seek your feedback along the way. We also want to assure you that our essential programs and services, including care management, clinic support, educational webinars, equipment loan programs, support groups, events of all kinds, and support of groundbreaking research initiatives will not be disrupted as a result of the separation process.

Embracing change provides Golden West with tremendous opportunities, and we also know there will be many questions. To learn more about our process and the path forward, please join us for our ASK ME webinar on Thursday, July 27 at 5 p.m. PT, 2 p.m HST featuring Golden West leadership or visit our website for more detailed information.

Everything we do is powered by people like you who care about people with ALS, and we deeply appreciate your continued commitment, during this transition period and far into the future. We welcome your feedback and invite you to connect with us at contactus@alsagoldenwest.org. We will reply as soon as possible.

In partnership and gratitude,