Amyotrophic Lateral Sclerosis Association HQ
Programs and results
What we aim to solve
The ALS Association wants to create a world without ALS.
Our programs
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.
Patient and Community Services
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.
Public and Professional Education
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.
Where we work
External reviews

Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
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.
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 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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Amyotrophic Lateral Sclerosis Association
Board of directorsas of 11/22/2022
Scott Kauffman
Fred DeGrandis
Warren Nelson
Millie Arnold
Lou Libby
Judith A Pratt
Eugene Brandon
Tom Carroll
Fred DeGrandis
Connie Houston
Scott Kauffman
Christi Kolarcik
Charles Robinson
Wendy Schriber
Mark Stancil
Jinsy Andrews
Larry Falivena
J. Thomas May
Kenneth Menkhaus
Kevin Spinella
David Van de Riet
John Krave
Kenton Van Harten
Rebecca Moss
Peter McKown
Nancy LeaMond
John Dallum
Paul Ingholt
Amy Brachio
Kathleen Boyce
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
No data