Amyotrophic Lateral Sclerosis Association HQ

aka The ALS Association   |   Arlington, VA   |  http://www.als.org

Mission

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

Ruling year info

1990

President & CEO

Ms. Calaneet Balas

Main address

1300 Wilson Blvd Suite 600

Arlington, VA 22209 USA

Show more contact info

EIN

13-3271855

NTEE code info

Specifically Named Diseases Research (H80)

Specifically Named Diseases (G80)

Neurology, Neuroscience (G96)

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 ALS Association wants to create 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?

Research

The Association funds scientific research grants to doctors/scientists to find the cause and cure of amyotrophic lateral sclerosis (ALS) in the United States and around the world.

Population(s) Served
Adults

The Association's national care services department, in working with the association's network of chapters, is committed to providing fully developed, managed and evaluated programs and services to people living with ALS, families, caregivers and professionals across the United States. Programs incorporate the perspectives from key stakeholders including people living with the disease, subject matter experts, clinical best practice, caregivers, technology, academicians and research. Activities address current needs and explore future services, creating a foundation for innovative and advanced program development based on specific community needs and knowledge advancements. Specific activities include 1) developing and implementing clinical and professional education programs based on ongoing needs assessments and best practice; 2) implementing certified care center certification and recertification programs based on nationally-recognized standards of practice, indcuding grants to support centers of excellence; 3) Developing strategies and actualizing plans to deliver care through 'other than certified centers; 4) Providing current information, resources and referrals to the communities we serve; And 5) Developing and implementing comprehensive, consistent programs and services that address individual, family, and caregiver needs based on 'best practice' and available resources. With the help of IBC funding, the association continues to fund grants to its certified treatment centers of excellence.

Population(s) Served
Adults

The Association's public policy department develops awareness and understanding of ALS and the work of the Association among the general public, healthcare professionals, the scientific community, and elected and other government officials. The Association works with Congress to continue funding for the National ALS Registry and the ALS Research Program at the Department of Defense as well as funding for ALS Research at the National Institutes of Health.

Population(s) Served
Adults

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2020

Charity Navigator 2020

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 ALS Association's ultimate goal is to find treatments and a cure for ALS while helping patients and their families manage the impact of the disease through various programs and services. Our mission priorities include raising public awareness about ALS; a global research program; providing people with ALS access to high-quality care and resources; and advocating for increased funding for ALS research and patient services.

The ALS Association conducts public awareness campaigns to increase awareness and strives to be the go-to source for up-to-date information. Our research program is presently funding and directing 169 global projects worth $11 million; this includes fellowship grants to young scientists just starting their careers in ALS. The Association works to provide patients with the highest possible quality of multi-disciplinary care through our Certified Center Program in order to prolong and improve the quality of life. Our nationwide network of 39 chapters offers programs, services, resources and education on the disease, life planning, strategies for medical and non-medical options and general support. Our annual National Advocacy Day and Public Policy Conference brings together patients, family members and concerned individuals from all over the United States to advocate for policies to help people with ALS. We work at the local, state and federal levels to foster government partnerships to increase services to people with the disease and to raise money for research.

The ALS Association commits approximately 80% of its annual budget to delivering program services, including research. We have a senior leadership team at the national office that includes individuals with expertise in chapter management, communications and marketing, care services, public policy and finance. Our nationwide network of 39 chapters provides a consistent organization presence in communities across the US. We work alongside many other ALS organizations to improve the lives of patients living with the disease. We are actively involved in the National Health Council and foster partnerships with government agencies, including the U.S. Center for Disease Control, along with pharmaceutical companies, biotech companies and academic institutions.

As of December 31, 2020, The ALS Association has approximately 169 research projects actively engaged in six areas of research committed to determining the causes of ALS disease. Projects that The Association funds are often published in major medical journals and these are available at www.als.org. The Association has 72 Certified Treatment Centers of Excellence (CTCE) and have 21 Recognized Treatment Centers (RTC's). Core requirements of CTCE's include strong chapter relationships, a lead ALS neurologist, a multidisciplinary team and engagement in active research related to ALS. The Association partnered with U.S. Food and Drug Administration to create the FDA guidance document relating to drug development.

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 shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

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

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    The ALS Association established two forums that allow people with ALS and their caregivers, ALS professionals and other community members to provide feedback on specific topics that are important to the ALS community.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

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 1/13/2021
SOURCE: Self-reported by organization
Board co-chair

Sue Gorman


Board co-chair

Mark Calmes

Warren Nelson

Millie Arnold

Lou Libby

Judith Pratt

Eugene Brandon

Tom Carroll

Fred DeGrandis

Connie Houston

Scott Kauffman

Christi Kolarcik

Charles Robinson

Wendy Schriber

Mark Stancil

Jinsy Andrews

Larry Falivena

Toby Kucharski

J. May

Kenneth Menkhaus

Kevin Spinella

David Van de Riet

Keith Gary

Clifton Gooch

John Krave

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

Organizational demographics

SOURCE: Self-reported; last updated 01/13/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability