PLATINUM2023

ALS Association Golden West Chapter

aka The ALS Association Golden West Chapter Inc.   |   Woodland Hills, CA   |  www.alsagoldenwest.org

Mission

The mission of The ALS Association Golden West Chapter is to discover treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. Our vision is to create a world without ALS. The Golden West Chapter serves people with ALS and their families in 31 counties throughout California and in the state of Hawaii. Everything we do advances the search for effective treatments and cures for ALS.

Ruling year info

1990

Principal Officer

Mr. Fred Fisher

Main address

PO Box 7082

Woodland Hills, CA 91365-7082 USA

Show more contact info

Formerly known as

The ALS Association Greater Los Angeles Chapter

The ALS Association Bay Area Chapter

EIN

95-4163338

NTEE code info

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (G01)

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

ALS is a fatal neurodegenerative disorder that affects nerve cells in the brain and spinal cord, causing progressive muscle weakness. People with ALS lose the ability to walk, move, speak, swallow and eventually breathe. ALS is a devastating disease that impacts the entire family physically, emotionally, and financially. People with ALS and their families often require support in identifying resources, securing durable medical equipment, navigating insurance, understanding the disease, and connecting with other to address feelings of isolation.

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?

Educational and Community Events

Ensure that all people with ALS and their circles of support are able to access the Chapter’s programs and resources./Engage target audiences to connect and/or participate with the Chapter via existing engagement opportunities (e.g., Walk, Ride, Participate, Donate, Share, Advocate, Support, Volunteer, Join)

Population(s) Served
People with diseases and illnesses

The Chapter will provide accessible education, training and emotional support activities for people living with ALS and their loved ones through multiple points of access.

Population(s) Served
People with diseases and illnesses

The Chapter ensures that people with ALS in our service area have access to support groups, whether online or, when safe, in person.

Population(s) Served
People with diseases and illnesses

We promote a team-driven approach within our organization and with other willing partners who share our vision and values. Our team members include those living with ALS, expert care providers in our multidisciplinary clinics, donors, supporters, Chapter staff, the National ALS Association, volunteers, biotech partners and members of the scientific community who invest their time, talent, ideas and resources. We act with the intention of creating and nurturing strong relationships with those within, and outside of, the ALS community in order to ensure that we are a fiscally healthy organization able to achieve our vision.
Proactive Culture

Population(s) Served
People with diseases and illnesses

Mobility is affected by ALS. ALS is a disease of the motor neurons: those that make up the chain of nerve cells starting from the brain, that travel through the spinal cord (Upper Motor Neurons - UMNs), and ending with nerve cells that project from the spinal cord to the muscles(Lower Motor Neurons-LMNs). Our Chapter loans Durable Medical Equipment and assistive devices to our patients while waiting for their own equipment.

Population(s) Served
People with diseases and illnesses

The ALS Association Golden West Chapter collaborates with physicians and clinics throughout our service area to help ensure that people living with ALS have access to specialized clinical care. The ALS Association's Certified Treatment Centers of Excellence and Recognized Treatment Centers provide compassionate, professional care in a supportive atmosphere.

Population(s) Served
People with diseases and illnesses

As a learning organization, the Golden West Chapter will continue its quest to deliver the highest level of care for people living with ALS, accelerate pioneering science, and promote important public policy initiatives. We recognize that in order to achieve our goals we will need to continue to raise more money, continue to attract new supporters and continue to heighten awareness of this devastating disease.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Patients served by the Chapter

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Professional Care Management

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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 Golden West Chapter will continue its quest to deliver the highest level of care for people living with ALS, accelerate pioneering science, and promote important public policy initiatives.

Care Services
•Utilize Continuous Quality Improvement Process in pursuit of high quality programs for people with ALS and their loved ones.
• Advance Clinic partnerships to increase levels of integrated service throughout our service area, advance ALS research and ensure continuity of care.
• Utilize the Chapter website, print materials, technology and collaborative partnerships to increase engagement in programs and services.

Marketing & Communications
•Enhance Strength and Image of the Chapter Brand by anchoring all forms of messaging to the Chapter's integrated mission and vision-driven view of the world – everything we do advances the search for a cure for ALS and by enhancing all existing communications channels (print, email, social, web) to add warmth, personality, and local authenticity
• Increase market segmentation by maximizing Donor Pro and Convio functions in order to retain current donors, engage new ones and provide first-rate communication to those many we serve and by identifying and evaluating additional tools to assist with segmentation objectives
• Promote access and connection by effectively using print and technology to ensure that all constituents are able to connect with the Chapter and with each other in meaningful ways.
• Deepen media-based relationships by identifying and soliciting engagement with media partners willing and able to advance the Chapter's mission
•Develop Marketing and Communications Capacity by expanding staff and volunteer support of Marketing and Communications functions and Chapter priorities.
Fund Development
Develop Organizational Capacity by creating a culture of philanthropy and developing relationship ambassadors (“Chapter champions") throughout the organization and by evaluating and adapting internal processes in support of fund development activities.
• Enhance Annual Revenue through effective Donor Acquisition/Donor Retention/Re-Committed Lapsed Donors and Upgraded donation Efforts by increasing family engagement (Chapter served) and new donor activity on an annual basis, by exploring, assessing and adopting new opportunities (projects/initiatives) and platforms (current and emerging technologies) for the purpose of new donor engagement and by making progress toward an increased donor retention rate each year, making progress toward increasing giving levels of retained donors each year and making progress toward re-engaging a higher number of lapsed donors each year.
• Execute Integrated and Compelling Messaging/Communication by anchoring all messaging to our integrated mission and vision driven view of the world – everything we do advances the search for a cure for ALS and by segmenting audiences and targeting messages throughout the year to yield deeper donor engagement and increased giving.
• Increase Signature and Special Events Revenue each year by increasing Walk/Ride participation of individuals and families served by the Chapter (including the creation of more IHO and IMO teams).

Strategic Objectives
• The Chapter will continue to cultivate and steward people with ALS, current and former caregivers and others across Chapter territory boundaries where appropriate.
• The Chapter will continue to be a resource to other Chapters, both within and outside of CA.
• The Chapter will seek opportunities to engage the National ALS Association to advance program, fund development and leadership development goals.
• The Chapter will cultivate relationships Federal and State Government departments and officials in order to increase awareness of the needs of the ALS community and advocate for programs that benefit the ALS Community.
• The Chapter will work closely with Affiliated, Recognized and Certified ALS Treatment Centers to advance a fully integrated community and clinic based care model.
• The Chapter will work closely with the scientific community that represents the full continuum from basic to clinical research.
• The Chapter will encourage and support the ALS patient community's participation in research activities.
• The Chapter will exhibit that our mission priorities are integrated and interdependent.
• The Chapter will help all stakeholder groups to understand that everything we do advances the search for an effective treatment and cure for ALS.
• The Chapter will address the challenge of continuity of care across a wide array of clinic and other Chapter partners, both within and outside of our service area.
• The Chapter will work closely with the National ALS Association to support the effectiveness of the National Board of Representatives and Board of Trustees in addressing the shared or competing objectives of the Chapter and the National ALS Association.
• The Chapter will evaluate opportunities to work with other organizations, both within and outside of The ALS Association, to insure that the proposed activity will advance progress related to our mission priorities.

The organization has significantly increased both the number of people with ALS served, and the financial investment in support of our mission priorities: Care Services, Research and Public Policy. Today we are reaching 97% of the predicted number of people diagnosed with ALS and we have made great progress toward our goal of delivering the Standard of Care (as codified in the California Health Code) to 90% of the people with ALS living in our service area.

We recognize that people with ALS and their families benefit from, and rely on, the Chapter to deliver high quality and high impact programs related to care, research and public policy. Robust, integrated and comprehensive programs are possible as a result of the Chapter's clear focus and dedication to each person living with ALS and their loved ones in our service area, and the development of strong affiliations with medical professionals and ALS multidisciplinary clinic teams, ALS researchers, bio-tech industry partners and elected officials. Partnership models are the key to realizing our Vision – creating a world without ALS.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Our care services and community outreach programming primarily serves individuals living with ALS and their family members. We also provide services and resources to other stakeholders in the ALS community, including, but not limited to, researchers, clinicians, legislators, and other providers.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Case management notes, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Among other things, we’ve added bereavement programs and services, increased programs by and for historically underserved communities, tailored educational webinar topics to meet constituent requests, and revised and increased care services web-based resources.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, We also share feedback with stakeholders relevant to the topic/issue.,

  • How has asking for feedback from the people you serve changed your relationship?

    It ensures that we make informed programmatic decisions that will best serve the individuals living with this disease. We need to know what will help improve their quality of life, and direct input from the people we serve ensures that we are prioritizing our efforts for maximum impact. Asking for specific feedback about their daily experiences is a key input in creating new programs, and ensuring that our families have the most positive experience with our organization. It’s all about helping people live longer and better with ALS.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

ALS Association Golden West Chapter
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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ALS Association Golden West Chapter

Board of directors
as of 02/09/2023
SOURCE: Self-reported by organization
Board co-chair

Ms. Patricia Schimbor


Board co-chair

Ms. Stacy Inman

Jared Gill

Karen Walker

Linda Della

David Cragg

Gary Galerne

Dr. Jonathan Katz

Robert Lietzke

Jan Medusky

Susan Morris

Michele Newman

Kathleen Rasmussen

Shae Selix

Pranjal Shah

Kathy Shawver Maffei

Simon Wise

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? No
  • 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

Organizational demographics

SOURCE: Self-reported; last updated 2/18/2021

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/18/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.