Amyotrophic Lateral Sclerosis Association

aka The ALS Association   |   Sacramento, CA   |  www.alssac.org

Mission

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their life to the fullest.

Ruling year info

1990

Executive Director

Amy Sugimoto

Main address

5701 Sunrise Blvd

Sacramento, CA 95610 USA

Show more contact info

EIN

68-0159292

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Nerve, Muscle and Bone Diseases (G50)

Human Services - Multipurpose and Other N.E.C. (P99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The mission of The ALS Association Greater Sacramento Chapter is to discover a treatment and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The Chapter operates on the guiding principle that people with ALS and their families come first in everything we do. Working to that end, we provide extensive wraparound services for families impacted by ALS that are designed to improve quality of life, address their physical, emotional, and financial needs, and provide access to consistent, quality care and programming, all while we work toward our ultimate vision of a world without ALS.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Care Services

At the cornerstone of the Chapter's mission is the Care Services Program, which helps patients, their caregivers, and families impacted by ALS live their lives to the fullest. Programs offered by the Chapter include: In-Home Care Consultations, Durable Medical Equipment Loans, Augmentative Speech Communication Device Program, Support Meetings, Multi-Disciplinary Centers of Excellence, & Educational Training Programs and Resources

Population(s) Served

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The goal of The ALS Association Greater Sacramento Chapter is to find a cure to ALS, and to provide comprehensive care to people living with ALS, their caregivers, and families so they may live their lives to the fullest.

The ALS Association is the only national nonprofit organization fighting the disease on every front – supporting cutting edge research, providing local care services, and promoting better public policy. The only way we will realize our vision of a world without ALS is to fully integrate all parts of our mission pillars.
The research we fund informs the development of treatments and technologies for people with ALS, and furthers support for more investment in ALS research.
Our care service programs provide wraparound, comprehensive care that improves quality of life and provides for the physical, emotional, and financial wellbeing of people living with ALS. All programs are offered free-of-charge and annually support approximately 300 people living with ALS, as well as 300 caregivers and their immediate family members.
The public policies we advocate for increase funding for ALS research and improve access to care and assistive technology for people living with ALS.

The ALS Association research program has been at the forefront of research since 1985 and is the world’s largest philanthropic funder of ALS research worldwide. Our direct funding is focused on high impact projects all around the world and our project selection approach is modeled after the National Institutes of Health.
The Greater Sacramento Chapter is an essential part of a nationwide effort to improve the lives of families living with ALS. We bring the Northern California community together to speak with one voice and advocate on their behalf before Congress, the White House, and with key federal agencies – including the National Institutes of Health, Department of Defense, the Food and Drug Administration, and Department of Veteran Affairs.
The Greater Sacramento Chapter supports the needs of people living with ALS by offering services that improve quality of life, provide a sense of hope, and keep people safe and independent in their own homes. To accomplish these goals, the Chapter supports two ALS Association Certified Centers of Excellence (UC Davis & Forbes Norris) as well as the Kaiser ALS clinic by providing staffing, funding, and coordinating closely with the clinic's medical team. In addition, the Chapter facilitates support groups and therapy for patients and caregivers, loans durable medical equipment and augmentative communication devices, provides referrals and information. In 2016 in collaboration with a group of major donors from the Sacramento community, the Chapter launched the PALS 4 Life grantmaking program. This lifeline provides grants to assist with the exorbitant costs ($200,000+ annually) of caring for someone with ALS.

Over the past 33 years, the Chapter has grown from a grass roots, volunteer-led effort, to a leading example of patient-centric care and collaboration in our region. In 2014, The ALS Association certified the UC Davis ALS Multidisciplinary Clinic as Center of Excellence, one of only 71 in the United States. Through this collaboration have created interdependence between care and research while providing critical wraparound care to people living with ALS in our community.
The ALS Association Greater Sacramento Chapter has supported initiatives that have resulted in funding for ALS research and key legislation that supports the ALS community, including government funding for ALS research through the Department of Defense and the National Institute of Health, the elimination of the 24 month Medicare waiting period for people living with ALS, the designation of ALS as a service-connected disease at the Department of Veterans Affairs, and federal protections around access to ventilators.
In 2019, The Greater Sacramento Chapter served over 300 families living with ALS, provided $44,000 in monetary grants, loaned 285 pieces of durable medical equipment, and held 65 support group meetings.
The Chapter continues to grow to provide services that meet the unique needs of the ALS community in Northern California. We are constantly working to expand program offerings based on bi-annual surveys and needs assessments, as well as ever-changing technology. Moving towards the future, we have plans to expand the equipment loan closet to provide cutting-edge communication and smart home equipment to help people living with ALS stay independent and safe in their own homes. In addition, we are actively working to expand Support Group Meetings to ensure that no person living with ALS must travel more than 40 miles from their home to attend a meeting. In working towards that effort, we recently added new support group meetings in South Lake Tahoe and Redding, as well as virtual meeting for ALS patients who are no longer able to travel. The Chapter is also evaluating future plans to add care services staff to the far-Northern counties in our service region, ensuring fair and equal access to care regardless of how far ALS families live from major metropolitan areas.

Financials

Amyotrophic Lateral Sclerosis Association
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Compare nonprofit financials to similar organizations

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Amyotrophic Lateral Sclerosis Association

Board of directors
as of 4/28/2020
SOURCE: Self-reported by organization
Board chair

Jim Morgan

Department of Developmental Services

Term: 2019 - 2022

Sheila Lamb Carroll

Senior Attorney/CEO, Carroll & Associates

Jennifer Porter

Account Executive, Hill-Rom Respiratory Care

Shelley Hoover

Retired, William Jessup University

Cherie Felsch

Retired

Dara Bellino

Retired

Heinz Ludke

Retired

Nanette Joyce

Co-Director Multidisciplinary ALS Clinic UC Davis Med Center

Claire Rogers

SMUD

Jeff Rosenblum

Attorney, Law Office of Jeffrey Rosenblum

Tony Sertich

Deputy Controller, Office of State Controller Betty T. Yee Executive Office

Ann Graef

Retired

Candace Bonney

Co-Founder, Bonney Heating & Plumbing

Martin McGartland

Retired, CEO

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes