Medical Research

Amyotrophic Lateral Sclerosis Association

  • Washington, DC
  • http://www.alsa.org

Mission Statement

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.

Main Programs

  1. Research
  2. Patient and Community Services
  3. Public and Professional Education
Service Areas

Self-reported

National

National office offers services throughout the U.S. We also have a nation-wide network of chapters and affiliated clinics.

ruling year

1990

Principal Officer

Self-reported

Ms. Barbara J Newhouse

Keywords

Self-reported

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

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Also Known As

The ALS Association

EIN

13-3271855

Physical Address

1275 K Street NW Suite 250

Washington, 20005

Contact

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

The ALS Association manages and funds a comprehensive global research program that engages recognized experts in the field to focus on ALS and collaborate with other researchers to study the most important aspects of the disease with the goal of better understanding the mechanisms involved that will lead to identification of the cause, effective treatments and ultimately a cure. To care for people with ALS and support their families and caregivers, The Association has a nationwide network of chapters providing services and loaned equipment, certified care centers and clinics using a multidisciplinary approach to deliver the most effective care currently available. To provide a united voice for people and encourage programs to benefit the ALS community, The Association actively engages with Congress and governmental agencies to encourage programs to benefit the ALS community. Through our literature, website, scientific and clinical webinars, public policy conference and collaborative symposia and workshops, public service announcements and marketing campaign, The Association is the most comprehensive source for public information about ALS and the initiatives to treat people with the disease and discover solutions to bring an end to this devastating disease.

Programs

Self-reported by organization

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

Program 1

Research

Not available

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

General Public/Unspecified

Military/Veterans

Budget

Program 2

Patient and Community Services

Not available

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Program 3

Public and Professional Education

Not available

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    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.
  2. What are the organization's key strategies for making this happen?
    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.
  3. What are the organization's capabilities for doing this?
    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.
  4. How will they know if they are making progress?
    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.
  5. What have and haven't they accomplished so far?
    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.
Service Areas

Self-reported

National

National office offers services throughout the U.S. We also have a nation-wide network of chapters and affiliated clinics.

Additional Documents

Social Media

Accreditations

Better Business Bureau Wise Giving Alliance

Charity Navigator

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

AMYOTROPHIC LATERAL SCLEROSIS ASSN
Fiscal year: Feb 01-Jan 31
Yes, financials were audited by an independent accountant.

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Operations

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

Amyotrophic Lateral Sclerosis Association

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2013
  • Board Chair, Board Co-Chair and Board Members
  • Access to the GuideStar Community
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Principal Officer

Ms. Barbara J Newhouse

BIO

Barbara Newhouse is President and Chief Executive Officer of The ALS Association, the only non-profit organization in the United States fighting the progressive, neurodegenerative disease ALS on every front. A widely respected leader who is accomplished in operations and strategic planning, Ms. Newhouse oversees The Association's activities in research, advocacy, finance, development, community services, patient services, communications and operations. She also is responsible for the strategic direction of the organization, which directs the largest privately-funded research program into ALS. In addition, she oversees The Association's national network of chapters that deliver an array of services to people living with ALS. Prior to coming to The ALS Association, Ms. Newhouse served as Region CEO of the Arthritis Foundation, Mid Atlantic Region, where in their regionalization, she created a new culture breaking down silos and empowering both staff and volunteers to lead in a unified way. She worked with the Foundation for four-plus years. Ms. Newhouse has also held leadership roles at the Alzheimer's Association, the Autism Society of America and the American Cancer Society. Mr. Newhouse holds a bachelor's degree in social work and master's degree in health care administration. She received a certificate with the Leadership Institute on Aging in 1994 and has attended various continuing education courses with the Kellogg School of Non-Profit. Ms. Newhouse has recently completed a Certificate in Leadership program through the University of Notre Dame on leading transformational organizations.

STATEMENT FROM THE Principal Officer

"Everyone touched by amyotrophic lateral sclerosis (ALS) shares a common dream: to once and for all put an end to this cruel disease known as Lou Gehrig's Disease. For many decades, progress seemed non-existent, until 1985 when the newly-formed ALS Association joined the fight against this devastating disease.
The ALS Association directs and funds the most comprehensive, global research program in the world. Working with and energizing the foremost experts in the field of ALS research, The Association partners with academia, industry, government and other ALS organizations in the spirit of collaboration. Each year, The Association sponsors and participates in national and international workshops and symposia to provide a platform for the active exchange of ideas among top scientific minds to accelerate the development of effective treatments for people fighting this disease.
With a nationwide network of chapters, The Association provides vital care services and loaned equipment to people with ALS and their families and caregivers. We partner and certify more than 70 ALS treatment centers and clinics, which deliver state-of-the-art multidisciplinary care and services in a supporting atmosphere. The ALS Association also provides a strong voice to help steer government funding toward ALS research, to influence Congress to support measures to benefit the ALS community, and to encourage agencies such as the Department of Defense to provide benefits to veterans and their families, since for unknown reasons people who served in the military are twice as likely to die from ALS than the general public.
The ALS Association is dedicated to achieving our vision to create a world without ALS."

Governance

BOARD CHAIR

William Thoet

Booz Allen Hamilton

Term: 2010 - 2016

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

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


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

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


RESPONSE NOT PROVIDED

BOARD COMPOSITION

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


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

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