The ALS Association - ALS Association Golden West Chapter

Our mission critical program priorities include care services, research, and advocacy. These programs are provided to people with ALS and their families at no charge. Our accomplishments for fiscal year ending 1/31/23 are as follows:Care Management -Strategically based in and near patients' home communities, the Chapter's Care Managers (CMs) work directly with persons with ALS and their families and serve as part of the treatment team in collaboration with clinicians from Certified Centers and affiliated clinics. Among other things, CMs provide critical information and referrals to patients and families, help patients obtain medical and communication-related equipment, connect them with essential resources, advocate for the uninsured, explain medical directives, and offer psychosocial support. This program is available throughout the 31 counties we serve in the state of California and the state of Hawaii. This program provided service to 1,912 persons with ALS. Service was available for 365 days.

ALS Clinic Support -The Golden West Chapter is committed to making sure that people living with ALS have access to specialized care that is based on best practices. Proven by research to help people with ALS live longer and better lives, access to multidisciplinary clinics is one of the cornerstones of the Golden West Chapter's wraparound model of care. Chapter care services staff members are embedded in each clinic, where they act as key members of the multidisciplinary team and provide comprehensive support to persons with ALS and their family members/caregivers. This model of care brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional, and Golden West Chapter chapter liaison. The ALS clinics supported by the Golden West Chapter provide compassionate care in a supportive, family-oriented atmosphere. In addition to supporting established clinics, the Golden West Chapter supports and promotes satellite clinics that improve access to critically needed services provided within this proven multidisciplinary, wraparound model of care.

Community Outreach & Awareness/Public Policy -Community outreach events, including our Walks to Defeat ALS, are opportunities to bring hope and a sense of community to persons with ALS and their families. By coming together to share their stories,patients and their families, as well as those who have lost loved ones to ALS, find strength and support with one another. Walks to Defeat ALS create an environment of empowerment where families and friends of persons with ALS are given an opportunity to affect public policy by signing petitions that are sent to the legislators representing their districts. Walks also bring awareness to local communities of those fighting ALS and of the support available to them through The ALS Association Golden West Chapter.The Golden West Chapter's Public Policy and Leadership Development program is intended to increase understanding, education and awareness of the devastating impact of ALS and the role that Golden West plays in achieving the three core components of our mission; care services for patients and families, global research for treatments and cures, and important Public Policy initiatives. Through these efforts, we engage volunteers in the communities we serve and give them theopportunity to participate in advancing the activity of the organization and the achievement of our mission priorities.This program also encompasses the California ALS Research Summit, an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives and patient advocates in ALS and related fields in the State of California. The purpose of the Summit is to help increase, expedite and promote the amount and level of amyotrophic lateral sclerosis and related research done in California; and to foster networking, collaboration and cooperation among investigators, their peers and their colleagues to identify, develop and deliver new and effective treatments, ideas and, ultimately, cures.

National ALS Association -As one of many chapters affiliated with The ALS Association, the Golden West Chapter provides ongoing financial support to The ALS Association national office to support federal public policy initiatives to improve the lives of patients and families living with ALS, as well as global cutting-edge research projects in search of ALS treatments and cures.