Golden West FAQ

The Golden West Chapter is one of 15 chapters legally separating from the national ALS Association. 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 United States. The 15 chapters are collaborating closely and will continue to maintain a robust network of information and resource sharing across the ALS community. Each one of the 15 chapters, including Golden West, is an independent organization that is well-positioned to continue effectively meeting the unique needs and responding to key priorities of the local communities that it serves. Golden West will continue to function as a leader in the field, fostering innovation and state-of-the-art programs.

The impact on Golden West is positive. Golden West is maintaining its independence to ensure access to the highest standard of care and continuity of care for those diagnosed with ALS in California and Hawaii. As one of the largest ALS organizations in the nation currently serving more than 2,000 people diagnosed with ALS, as well as many family caregivers, professional caregivers, and loved ones, we will leverage our expertise in creating access to robust community-based care services, strong advocacy at the local, state and federal levels as well as within healthcare systems, accelerating research, and delivering public education and awareness programs to benefit the ALS community long into the future.

Over the past two years, the national office of the ALS Association has attempted to merge all 34 legally and financially separate corporate chapter entities across the country into a single organization. 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 of care for our ALS community, to lead efforts to advance public policy initiatives, and to accelerate ALS research.

Initial action was taken in July of 2021 immediately upon notice of the national office’s plan to force the dissolution of all independent chapters. All parties reached an agreement with the national office in June 2023, after two years of discussions.

Each of the 15 chapters separated from the ALS Association effective September 1, 2023. The full operational separation will be completed by January 31, 2024.

Yes. Golden West has always existed as a legally and financially independent organization incorporated in California. Professional leadership, responsible fiscal decision-making and oversight, and strong fundraising across many revenue channels has led to Golden West receiving the highest ratings from Charity Navigator for the past 10 years. We responsibly allocate our resources in support of meaningful and impactful mission-critical activities. Per organizational policy and non-profit best practices, we maintain appropriate operational reserves at all times, and plan strategically for service delivery and mission fulfillment. We attract and retain top talent in the field and strive to exceed fundraising goals every year in order to ensure program support and power progress towards preventing, treating, and curing ALS.

Golden West is a transparent and trusted community resource in California and Hawaii and a respected leader within and among the spheres we operate, including, but not limited to: the nonprofit sector, ALS-focused organizations, multidisciplinary clinics, ALS research institutions, advocacy networks, and industry. We are enthusiastic and confident in our ability to independently lead and serve our local ALS communities in California and Hawaii.

Golden West is partnering closely with the 14 other independent chapters separating from the ALS Association. This synergetic network provides opportunities on multiple fronts to maximize our impact, innovate, and achieve economies of scale across the country – all in support of providing the ALS community. We will provide updates as this important collaboration continues to evolve.

Golden West is committed to helping people live longer and better with ALS by providing comprehensive, integrated, multidisciplinary community-based care at no cost to the ALS community. We understand the value of being able to communicate, function safely at home, travel to ALS clinics for comprehensive evaluation and treatment, and so much more. Our programs are designed to meet essential care needs for the person diagnosed with ALS, as well as family caregivers. Every client will continue to have access to a regional professional care manager, our equipment loan program featuring both medical equipment and communication devices, more than 30 monthly support groups, resources for children and families, bereavement support services, educational programs and webinars, eight ALS Certified Treatment Centers of Excellence and more than 20 affiliated clinics, and opportunities to participate in important advocacy activities and research initiatives that benefit the entire ALS community.

Golden West will continue to provide high-quality concierge care services tailored to meet the needs of each person with ALS and their circle of support. We have a track record of evidence-based, data-driven, client-centric approaches to program development and strategic initiatives. To that end, we are always evolving our programs to reflect the latest thinking and approaches. We will announce new care services via our website, social media, and eNewsletter and look forward to sharing some new offerings in the coming months.

Yes. Golden West’s robust care services program will continue to be provided across Hawaii and California. In fact, we have even more flexibility to support people impacted by ALS in parts of California that were previously restricted to us.

Community outreach events scheduled through January, 2024 will be produced and hosted as planned and will not be affected. We look forward to seeing you at one or more of your favorite Golden West gatherings in the upcoming months!

Whether you are interested in sports and outdoors, arts and entertainment, local resources and ALS care, informative mission updates, volunteerism, or quality time with family and friends, Golden West staff and volunteers will continue to provide a cherished array of vibrant and meaningful opportunities for you to connect with and support our ALS community. Some, but not all, of next year’s events may adopt a new look and feel. Now and always, your ongoing participation is critical to generating ALS awareness and funds for the highly valued programs and services offered by Golden West.

Whether you are interested in sports and outdoors, arts and entertainment, local resources and ALS care, informative mission updates, volunteerism, or quality time with family and friends, Golden West staff and volunteers will continue to provide a cherished array of vibrant and meaningful opportunities for you to connect with and support our ALS community. Some, but not all, of next year’s events may adopt a new look and feel. Now and always, your ongoing participation is critical to generating ALS awareness and funds for the highly valued programs and services offered by Golden West.

Everything we do advances the search for effective prevention strategies, treatments, and cures for ALS. From care services to advocacy, to fundraising, to annually convening the world's most brilliant ALS researchers, our approach to research is designed to accelerate discovery, de-risk therapy development, and improve access to promising treatments for the ALS community. As one of the largest patient service organizations in the U.S. situated in California, a state that is a world leader in technology and biotechnology, we are uniquely positioned to power progress in ALS research. That remains unchanged, and we will have new opportunities to spearhead collaborative, innovative, inclusive, and strategic initiatives and engage the ALS community in partnership with ALS clinicians, academic institutions, federal and state agencies, industry representatives, and other nonprofit organizations aligned with our mission and vision.

Everything we do advances the search for effective prevention strategies, treatments, and cures for ALS. From care services to advocacy, to fundraising, to annually convening the world's most brilliant ALS researchers, our approach to research is designed to accelerate discovery, de-risk therapy development, and improve access to promising treatments for the ALS community. As one of the largest patient service organizations in the U.S. situated in California, a state that is a world leader in technology and biotechnology, we are uniquely positioned to power progress in ALS research. That remains unchanged, and we will have new opportunities to spearhead collaborative, innovative, inclusive, and strategic initiatives and engage the ALS community in partnership with ALS clinicians, academic institutions, federal and state agencies, industry representatives, and other nonprofit organizations aligned with our mission and vision.

As an ALS organization representing approximately 5-10% of the patient population in the U.S. and affiliated with many of the country’s leading academic research and healthcare systems, as well as some of the world's biggest and most innovative biotech, pharma, and technology companies, we will continue to fund and support the most promising peer-reviewed research and innovative endeavors that move the ALS research field forward and accelerate the search for effective prevention strategies, treatments, and cures for ALS.

Public and philanthropic support, including gifts of all sizes made throughout the year, makes everything we do possible. Golden West does not receive funding from the national ALS Association. In fact, historically, as a member of the ALS Association, Golden West has been contractually obligated to share a small portion of our revenue with the national office. Given that we aren’t members of the ALS Association, that is no longer the case.

As always, your gift to Golden West supports our mission-critical activities related to local care, global research, and advocacy at the local, state, and federal levels. And with strong ratings from nonprofit evaluators, you can be assured that your gift is well deployed for the purpose intended. Golden West affirms the “Donor Bill of Rights” and shares financial statements online so that you can easily see how funding is allocated in support of the ALS community.

Everything we do is powered by people who care about people diagnosed with ALS, and we deeply appreciate your past and continued commitment during this transition period and beyond. Your gifts ensure access to comprehensive, expert care services for more than 2,000 people living with ALS and their loved ones, at no charge, in California and Hawaii. In addition to supporting access to the essential care and support that helps individuals live longer and better with ALS, you make it possible for the ALS community to participate in critical advocacy and research opportunities that provide real help and hope in the search for effective prevention strategies, treatments and cures for ALS.

Every year, legacy gifts provide meaningful support for our programs and mission priorities. If you have included, or intend to include, our organization in your estate plan, there are two things you should do to confirm that Golden West will receive your legacy gift.

• Make sure that all of your documents indicate that “Golden West” is the intended beneficiary and include our tax ID number (95-4163338) for reference. Our tax ID number remains the same and will not change. Having these two pieces of information on your estate documents – including beneficiary designation forms, your will and any amendments, as well as trust documents to name a few – will help to clearly indicate the organization you intend to support with your estate gift.
• Please let us know that Golden West is a beneficiary of your estate plan. We are extremely grateful for these special gifts and want to thank you for your strong support. When you reach out to us, we can confirm that you have the correct information to ensure that we receive your estate gift.

Sometimes people do make a gift to an organization by mistake. If you think that you may have accidentally made a gift to the ALS Association instead of Golden West, or if you simply want to confirm that a recent gift you have made has been received by Golden West, please let us know. We will research the situation, and we can request that your gift be redirected to Golden West if needed.

Changes in our status as a member of the ALS Association does not affect your ability to fundraise and make tribute gifts in support of Golden West and the ALS community. That said, we have been migrating all former Community of Hope pages to our new platform, and we are happy to move your fund if that has not already happened. Please reach out to us to confirm that your online tribute fund is set up and functioning the way that you’d like it to.

These organizational changes do not affect any current monthly gift or multi-year Campaign for Cures and Care commitments. Your strong support throughout the year and through our major gifts campaign to power our mission priorities is even more meaningful now, and if you have any questions about how to become a sustaining donor, convey a major gift commitment, or increase your support to Golden West, please reach out to us.

Yes, we appreciate all support, both general and restricted support, and can designate gifts in support of the programs and mission priorities that are most meaningful to you.

If you recently began receiving emails from the national ALS Association and do not wish to receive them, you are free to unsubscribe from unwanted emails. Please double check the footer at the bottom of the email before you unsubscribe to confirm which organization you will no longer receive communication from. Communication from Golden West will have a Woodland Hills, CA and Honolulu, HI address.

If you benefit from the local services, support and community we offer in your region, please opt to continue receiving emails from us. And when responding to requests to donate, be sure that the request is coming from Golden West.

If you unsubscribe from emails from the ALS Association and continue to receive unwanted communications from the organization, you can email donations@als.org to ask to be removed from their database.

With stakeholders committed to our success, we envision expanding our evidence-based core programs to address unmet needs and opportunities to innovate. As we have for many years, we are committed to providing a high standard of care, investing in ALS research, and advancing advocacy matters of crucial importance. In the coming months, you will experience meaningful change for our organization that will include a new name, a new logo, and a continued commitment to excellence, breakthroughs, and people-centric care.

We will share updates as they develop. If you have feedback or questions, we invite you to email contactus@alsagoldenwest.org, and a member of our staff will get back to you as soon as possible.