Medical Research

Amyotrophic Lateral Sclerosis Association

aka The ALS Association

Washington, DC

Mission

Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.

Ruling Year

1990

Principal Officer

Ms. Barbara J Newhouse

Main Address

1275 K Street NW Suite 250

Washington, DC 20005 USA

Keywords

ALS, amyotrophic, Lou Gehrig's disease, ALS Association, MND

EIN

13-3271855

 Number

1972048804

Cause Area (NTEE Code)

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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Programs + Results

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Our programs

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

SOURCE: Self-reported by organization

Research

Patient and Community Services

Public and Professional Education

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Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

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 TREAT ALS(TM), is presently funding and directing 98 global projects worth $18.1 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 38 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 over 70% 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 Chief Scientist is internationally respected and leads The Association's global research program. Our nationwide network of 38 chapters provides a consistent organization presence in communities across the US. We work alongside many partners to improve the lives of patients living with the disease. These partners include MDA, ALS-TDI and Project ALS. 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.

Every fiscal year, The ALS Association establishes measurable objectives that support the strategic plan. The CEO reports on progress towards these objectives to the National Board of Trustees of The Association on a regular basis. In addition to completing key projects as an indicator of success towards intended impact, The Association also has metrics related to the following: donated media value, media placements; social media audiences; online engagement; research expenditures, workshops and strategic meetings; research webinars and news updates; certified centers; distribution of educational materials; partnerships and other collaborations; government funding for ALS-related projects, and more. The Association also has a strategic planning committee on its Board of Trustees, which reviews the organization's five-year strategic plan and develops a collaborative process to provide input on new plans.

As of March 31, 2014 The ALS Association has approximately 98 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.alsa.org. The Association has 39 Certified Treatment Centers of Excellence (CTCE) and expects to have 47 CTCE's by the end of 2014. 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 convene the first ever ALS specific public hearing and worked with Congress to secure continued funding for the ALS Research Program at the Department of Defense ($7.5 million) and the National ALS Registry at the Centers for Disease Control and Prevention ($6 million). The Association earned $6 million in donated media and is working on a new campaign to raise awareness about the disease.

External Reviews

Awards & Accreditations

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Financials

Amyotrophic Lateral Sclerosis Association

Fiscal year: Feb 01-Jan 31

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Operations

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

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  • Forms 990 for 2017, 2017 and 2016
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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable