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.
President & CEO
Ms. Calaneet Balas
1275 K Street NW Suite 250
Washington, DC 20005 USA
ALS, amyotrophic, Lou Gehrig's disease, ALS Association, MND
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
What we aim to solve New!
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What are the organization's current programs, how do they measure success, and who do the programs serve?
SOURCE: Self-reported by organization
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. For the year ending January 31, 2017, the Association worked 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. The Association also worked to draft an FDA guidance document for ALS Drug Development.
Where we workNew!
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 107 global projects worth $18 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 over 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 Chief Scientist is internationally respected and leads The Association's global research program. Our nationwide network of 39 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 October 31, 2018, The ALS Association has approximately 107 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 64 Certified Treatment Centers of Excellence (CTCE) and have 23 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.
Awards & Accreditations
Better Business Bureau Wise Giving Alliance
Amyotrophic Lateral Sclerosis Association
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The people, governance practices, and partners that make the organization tick.
Board of Directors
as of 11/20/2018
Term: 2013 - 2019
Sue Gorman Esq.
Sue Gorman Interior Designs
Term: 2013 - 2019
Southeastern Pizza Group, LLC (Jem Restaurant Group)
NCAA and NBA
Kaiser Foundation Hospitals, Kaiser Foundation Health Plan, Inc.
The Providence ALS Center
Community Foundation of Huntsville/Madison County
The Association Greater Philadelphia Chapter
McManus and Pratt
ERA Team VP Real Estate
SOURCE: Self-reported by organization
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?
Has the board conducted a formal, written assessment of the chief executive within the past year?
ETHICS & TRANSPARENCY
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Has the board conducted a formal, written self-assessment of its performance within the past three years?