ALS Network

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 1/31/24 are as follows:Care Management -Strategically based in and near patients' home communities, ALS Network 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 ALS specialty care 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. In addition, the CM program provides help navigating complex benefits systems, more than 30 monthly support groups, bereavement support, educational webinars, safety assessments, in-clinic support, and many other things. This program is available throughout California and Hawaii. This program provided support to over 2,500 people living with with ALS and their families. Service was available for 365 days.

Community Outreach & Awareness/Public Policy -Community outreach events, including our ALS Walk & Rolls, are opportunities to bring hope and a sense of community to persons with ALS and their families. By coming together to share their stories, people with ALS and their families, as well as those who have lost loved ones to ALS, find strength and support with one another. Community outreach events 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. These events also bring awareness to local communities of those fighting ALS and of the support available to them through ALS Network.The ALS Network Public Policy and Leadership Development program is intended to increase understanding, education and awareness of the devastating impact of ALS and the role that ALS Network plays in achieving the three core components of our mission; care and support for people with ALS 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 the opportunity to participate in advancing the activity of the organization and the achievement of our mission priorities. In addition, these activities have a direct positive impact on increasing access to care and ensuring significant federal funding of ALS research. This program also encompasses the organization's robust ALS Network Research Summit, an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives and patient advocates in ALS and related fields. The purpose of the Summit is to increase, expedite and promote the amount and level of ALS and related research 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.