THE GOLDEN WEST CHAPTER IS HERE TO ENSURE NO ONE IS ALONE WHEN FACING ALS.
As we reflect on almost two years of operating during a global pandemic, we are inspired by the ways our ALS community has rallied to help one another. During this time, with your ongoing support, the Golden West Chapter of The ALS Association turned continuing challenges into opportunities to deliver upon our mission in new and impactful ways.
The Golden West Chapter has continued innovating, expanding access to essential care services for more than 1800 people with ALS and their loved ones, advancing ALS research, promoting important public policy initiatives on behalf of the ALS community, and raising ALS awareness by sharing your stories.
Everything we do at the Golden West Chapter advances the search for effective treatments and cures for ALS. We invite you to learn more about how we excelled in 2021 because of people like YOU!
PROVIDING COMPASSIONATE CARE AND SUPPORT
In 2021, with safety and access to care at the forefront of our priorities, the Golden West Chapter provided highly-valued programs and services via telehealth platforms to more than 1800 people with ALS and their loved ones in 31 counties throughout California and in the entire state of Hawaii.
Find out more about how your support ensures professional, compassionate care services for families facing ALS through Golden West Chapter care services programs.
Our professional Care Managers helped people living with ALS and their loved ones access clinical care, resources, equipment, critical information, and expert advice to maintain and maximize their health, safety, and quality of life. Did you know that the Golden West Chapter offers these services free-of-charge for people living with ALS and their families? Please watch this video to learn more from some of our care managers.
This year, 440 people who were newly-diagnosed with ALS connected with the Chapter, representing more than one new family every day of the year, and gained access to our world-class wraparound model of care.
Our proven model of robust, proactive, multidisciplinary care, whether accessed online or in person, helps people live longer and better with ALS, while also accelerating the search for treatments and cures.
Our popular ASK ME educational webinar series featured experts on a variety of topics of interest to the ALS community. These webinars were viewed thousands of times through live broadcasts and on-demand via our social media channels.
The number of families facing ALS who seek Golden West Chapter services grows every year. In some regions, we are serving more than 100% of the predicted ALS population.
In 2021, the Golden West Chapter facilitated more grants and equipment loans than ever before to meet the needs of families facing ALS who require life sustaining and quality of life enhancing durable medical equipment and augmentative communication devices.
The Golden West Chapter conducted more than 30 support groups online every month and expanded offerings for targeted populations including LGBTQIA+, Spanish language speakers, trach/ventilator users, those diagnosed with familial ALS, veterans, families raising young children, bereaved families, and caregivers and loved ones groups.
The Golden West Chapter hosted regular meetings with our 31 ALS clinic partners, including eight Certified Treatment Centers of Excellence and Recognized Treatment Centers, to share ideas, collaborate, and seamlessly provide high quality multidisciplinary care via in-person and telehealth platforms.
More people with ALS facing financial or transportation challenges were able to access resources because of the Golden West Chapter’s expansion of the ability to connect virtually with clinical teams and care managers.
The Chapter convened its first Advisory Group comprised of people living with ALS and family members. The group’s primary purpose is to convey feedback about programs and services and to inform ideas for enhancements and improvements.
The Golden West Chapter shared powerful stories of many people we serve who are living with ALS, and their loved ones’ stories too. For example, please watch this video featuring Amy and Dante Diego to learn more about this family, their ongoing battle with ALS, and their commitment to the mission of the Golden West Chapter.
Thank you for helping people with ALS and their loved ones through your support of our care services programs.
ADVANCING ALS RESEARCH AND SCIENTIFIC DISCOVERY
Your support of the Golden West Chapter helps to power the world’s largest ALS research program fueling more than 155 active scientific projects in labs around the globe. We fund the most promising research everywhere, inspiring partnerships across all sectors — government, industry, academia, and nonprofit — while supporting new generations of scientists. From harnessing innovative ideas, to translating scientific concepts into therapies, our collaborative approach accelerates the search for effective treatments and cures for ALS.
Find out more about how your support of the Golden West Chapter advances ALS research and scientific discovery.
The Golden West Chapter hosted the 11th annual California ALS Research Summit, bringing together over 100 world-renowned researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields. Outcomes from the summit were presented to the public at our ASK ME webinar, “ALS Research and Care in 2021," one of the most attended and viewed webinars of the year.
The Golden West Chapter launched our first Industry Partner Consortium, with long time supporters CNS and Cytokinetics. These industry partners are deeply committed to supporting the ALS community, scientific discovery, collaboration, and investment in therapies for neurodegenerative diseases, including ALS.
Our Chapter’s 2021 Commitment to Cures honoree, Amylyx Pharmaceuticals, Inc, announced that the AMX0035 clinical trial, funded by The ALS Association, demonstrated statistically significant treatment benefits for people with ALS in clinical trials. Amylyx filed a New Drug Application (NDA) with the U.S. Food and Drug Administration (FDA) for approval of AMX0035. The FDA has accepted Amylyx Pharmaceuticals' NDA and granted priority review, with a target date of June 29, 2022 for completion of review and action. Please watch this video to learn more about Amylyx.
Members of the Golden West Chapter leadership team have been appointed to several volunteer roles within the California Institute of Regenerative Medicine (CIRM), California's Stem Cell Agency. These include serving as a part of a clinical trial advisory panel and on the Independent Citizens’ Oversight Committee that provides recommendations regarding CIRM funding, ethical standards, and research facilities.
The Golden West Chapter is proud to celebrate the passion and dedication of our partners in ALS research. One example is Dr. Noah Zaitlen who is using neurogenomics to try to find biomarkers for ALS. His focus on advancing neurodegenerative disease research took on a deeper resonance after his father, Richard Zaitlen, was diagnosed with ALS in 2016. Watch this video to learn more about the Zaitlen family's commitment to the mission of the Golden West Chapter.
We are grateful for your support that drives exciting developments in ALS research, advancements in drug development and clinical trials, and new collaborations designed to accelerate the pace of discovery.
PROMOTING ADVOCACY AND PUBLIC POLICY INITIATIVES
Many dedicated ALS advocates work year-round at the federal, state, and local levels to address legislative issues and secure funding to improve the lives of people with ALS and their families. Our efforts in California, Hawaii, and across the country have informed elected officials and raised public awareness to increase access to equipment and services, to accelerate drug development, to protect insurance and disability benefits, and to help reduce barriers to ALS care and research.
Find out more about how your support promotes advocacy and public policy initiatives on behalf of the ALS community served by the Golden West Chapter.
The State of California renewed its multi-year funding for the Golden West Chapter's evidence-based wraparound model of care that helps people live longer and better with ALS, while also advancing the search for effective treatments and cures. The genesis of this important public policy initiative began more than 15 years ago and was made possible through the vision and steadfast effort of dedicated Golden West Chapter ALS advocates, staff, and supporters.
To commemorate the renewal of state funding, the Chapter presented the Dean and Kathleen Rasmussen Advocate of the Year award to California State Assemblymember Dr. Joaquin Arambula. Watch this video to learn more about Dr. Joaquin Arambula's efforts to gain multi-year funding for our wraparound model of care.
Hundreds of ALS advocates and organizations, including the Golden West Chapter, advocated for the enactment of the Accelerating Access to Critical Therapies (ACT) for ALS, legislation that supports access to experimental treatments and provides the FDA with additional research capacity and public-private partnerships to speed development and approval of new treatments. This historic act was signed into law by President Biden on Thursday, December 23, 2021.
The Golden West Chapter shared compelling stories of many people living with ALS and their loved ones who are serving as ALS advocates. Please watch this video about José Fajardo, who has been living with ALS since 2019. Along with the help of his wife, José is committed to using his voice as an ALS advocate through Hawaii Public Radio and other public platforms to raise support for effective treatments and cures for ALS.
With your support we are powering change to improve the lives of families facing ALS, expanding access to care and resources, and providing increased government funding for cutting-edge ALS research.
EMPOWERING COMMUNITY AND INSPIRING ACTION
Each year, the Chapter hosts numerous community outreach events to provide an opportunity for anyone touched by this devastating disease to gather, share, and connect with others. Our family-friendly activities – like our Walks to Defeat ALS, Rides to Defeat ALS, ALS Golf Classic, and Champions for Cures and Care celebration – empower the ALS community and inspire others to create a world without ALS.
Find out more about how your participation helps raise awareness and funding to ensure that the Golden West Chapter is able to provide programs and resources for the families facing ALS that we serve in California and Hawaii.
In 2021, Kevin Heller, Team Captain of #GiveEmHeller of the Napa Valley Ride to Defeat ALS, was selected to receive one of the four National ALS Association Hero Awards—the highest honor given by The ALS Association and its 39 Chapters. People living with, or who have lived with ALS, and made a significant impact in the fight against ALS are presented with this award.
The ALS community and Major League Baseball hit a home run with the inaugural Lou Gehrig Day. In stadiums across the nation, teams offered people living with ALS and their families special game day experiences. This day would not have been possible without the hard work of members of the Lou Gehrig Day Committee who were determined to make this day a success. The Golden West Chapter was honored to participate in events with the Oakland Athletics and San Francisco Giants.
Every year, on August 7 (8/7), the San Francisco 49ers have commited to honor and remember the life of their beloved player #87, Dwight Clark, who lost his battle with ALS in 2018, and to celebrate the ALS community. The Golden West Chapter was honored to participate again in this special program with the 49ers and other ALS advocates at Levi Stadium in 2021.
In 2021, the ALS community showed its “Never Give Up” spirit as 11 Walk communities throughout California and Hawaii joined together online for the Golden West Chapter Walk to Defeat ALS.
Our Rides to Defeat ALS in Napa Valley and SoCal also were held online. Many Walk and Ride participants also held small community gatherings in support of these annual community outreach events.
The Golden West Chapter hosted one event in-person, the Petersen International Underwriters ALS Golf Classic on a beautiful day in December at the Valencia Country Club.
Inspired by our ALS community, we organized many engagement activities and special events including a movie night about the beloved San Francisco University High School coach Jim Tracy who inspired the annual 5K event in his name, the first ever Walk to Defeat ALS tshirt contest, our online ALS Day of Remembrance, and Rocking Out ALS, a new music event featuring artists from around the globe.
We celebrated everyone who has been a part of our Napa Valley Ride to Defeat ALS community over the last 17 years. Together, we have raised more than $10 million through this event alone, making it the largest single fundraiser for the ALS community nationwide.
We are so grateful to the many people in our ALS community who share their stories to advance the search for effective treatments and cures. Please watch this video about Charlie Wren, who has been living with ALS since 2015, and his wife Angie, and learn more about their commitment to raise awareness broadly and support for every person affected by ALS.
We are grateful for your efforts through our community outreach events to help provide valuable care services to families facing ALS, fund cutting-edge ALS research, and promote public policy initiatives on behalf of people with ALS and their loved ones.
YOU MAKE ALL OF THIS POSSIBLE — THANK YOU!
The generosity of individuals, families, companies, foundations, and philanthropic organizations makes what we do possible.
We are extremely grateful to all of our donors, those who make multi-year, major gift commitments through our Campaign for Cures and Care; those who make monthly contributions and participate in workplace giving and matching gift programs; our champions who establish Community of Hope tribute webpages; family grantmakers and foundation partners; members of our Legacy Society who have designated the Chapter as a beneficiary in their estate plan; people who donate in kind items, equipment, and wheelchair-accessible vehicles; and EVERYONE who makes a thoughtful gift because they care throughout the year. It is your steadfast commitment that powers our programs and services and provides help and hope to the ALS community.
We are so proud to have shared more than 30 stories and videos about our ALS community over the past year and helped to shine a spotlight on their efforts to raise ALS awareness and support. People like Lorene and Tony Lee who are grateful for the support they have received from the Golden West Chapter and ALS community, since her diagnosis in 2010. Please watch this video and learn more about Lorene and Tony's dedication to the Chapter’s mission and their commitment to helping others affected by the disease.
In 2021, for the ninth consecutive year, Charity Navigator, America’s largest independent charity evaluator, has awarded the Golden West Chapter its highest rating in recognition of strong investment in our mission priorities, sound fiscal management, accountability, and transparency. Only 5% of rated organizations receive this exceptional distinction. We are also an accredited charity with the BBB Wise Giving Alliance and a member of the National Health Council.
Thanks to your contributions and commitment, we have accomplished so much together. With your continued support, we can do so much more. On behalf of all of us at the Golden West Chapter, we are grateful for all of YOU!
