Amyotrophic Lateral Sclerosis Assn
- Assets
- $127.9m
- Revenue
- $126.5m
- Investments
- $0.0
- Employees
- 598
- Location
- Arlington, VA
- Founding
- 07/1990
- Data as of
- 01/2024
- EIN
- 13-3271855
Organization Overview
Amyotrophic Lateral Sclerosis Assn, operating under the name The Als Association, is located in Arlington, VA. The organization was established in 1990. According to its NTEE Classification (G50) the organization is classified as: Nerve, Muscle & Bone Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 01/2024, Als Association employed 598 individuals. This organization is a parent organization of an affiliated group for tax-exemption purposes. Als Association is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 01/2024, Als Association generated $126.5m in total revenue. This organization has experienced exceptional growth, as over the past 9 years, it has increased revenue by an average of 19.4% each year . All expenses for the organization totaled $98.8m during the year ending 01/2024. While expenses have increased by 12.1% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2016, Als Association has awarded 1,717 individual grants totaling $157,281,294. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2024
Describe the Organization's Mission:
Part 3 - Line 1
LEADING THE FIGHT TO CURE AND TREAT ALS THROUGH RESEARCH, ADVOCACY AND CARE SERVICES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PATIENT AND COMMUNITY SERVICES: THE ASSOCIATION 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, INCLUDING 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.
RESEARCH PROGRAMS - THE ASSOCIATION FUNDS SCIENTIFIC RESEARCH GRANTS TO DOCTORS/SCIENTISTS TO FIND THE CAUSE AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS (ALS).
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, 2024, 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. IN ADDITION, THE ADVOCACY DEPARTMENT SECURED FUNDING FROM STATE GOVERNMENTS FOR CARE AND SUPPORT OF PEOPLE LIVING WITH ALS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Scott Kauffman Chair | OfficerTrustee | 5 | $0 |
Fred M Degrandis Vice-Chair | OfficerTrustee | 5 | $0 |
Sue Gorman Immediate Past Chair (thru 09/23) | OfficerTrustee | 5 | $0 |
Sandra Piersol Secretary | OfficerTrustee | 5 | $0 |
Mark Stancil Treasurer | Trustee | 5 | $0 |
Connie Houston Trustee | OfficerTrustee | 2 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Mccormick Group Consulting Services | 1/30/24 | $564,568 |
Barnes & Thornburg Llp Attorney (Legal Services) | 1/30/24 | $2,644,116 |
Lautman Maska Neill & Company Fundraising Counsel | 1/30/24 | $519,308 |
Venable Llp Consulting Services | 1/30/24 | $312,546 |
Attain Consulting Group Llc Consulting Services | 1/30/24 | $288,958 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $1,262,462 |
| Membership dues | $0 |
| Fundraising events | $13,739,099 |
| Related organizations | $0 |
| Government grants | $4,816,275 |
| All other contributions, gifts, grants, and similar amounts not included above | $104,272,261 |
| Noncash contributions included in lines 1a–1f | $874,500 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $124,090,097 |
| Total Program Service Revenue | $0 |
| Investment income | $1,736,390 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $672,836 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$138,874 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $126,450,238 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $15,183,912 |
| Grants and other assistance to domestic individuals. | $4,307,653 |
| Grants and other assistance to Foreign Orgs/Individuals | $3,400,801 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $2,132,923 |
| Compensation of current officers, directors, key employees. | $1,222,377 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $37,355,453 |
| Pension plan accruals and contributions | $2,273,914 |
| Other employee benefits | $3,738,362 |
| Payroll taxes | $2,836,960 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $2,887,621 |
| Fees for services: Accounting | $126,934 |
| Fees for services: Lobbying | $720,081 |
| Fees for services: Fundraising | $724,225 |
| Fees for services: Investment Management | $154,351 |
| Fees for services: Other | $6,162,477 |
| Advertising and promotion | $608,366 |
| Office expenses | $2,743,018 |
| Information technology | $4,886,126 |
| Royalties | $5,200 |
| Occupancy | $1,977,436 |
| Travel | $1,596,648 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $911,600 |
| Interest | $72,479 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $2,105,204 |
| Insurance | $280,052 |
| All other expenses | $600,602 |
| Total functional expenses | $98,839,577 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $907,434 |
| Savings and temporary cash investments | $4,912,160 |
| Pledges and grants receivable | $58,562,559 |
| Accounts receivable, net | $3,083,190 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $1,622,166 |
| Net Land, buildings, and equipment | $3,070,233 |
| Investments—publicly traded securities | $48,852,801 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $6,881,006 |
| Total assets | $127,891,549 |
| Accounts payable and accrued expenses | $10,766,484 |
| Grants payable | $9,152,201 |
| Deferred revenue | $1,066,957 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $8,773,681 |
| Total liabilities | $29,759,323 |
| Net assets without donor restrictions | $12,447,847 |
| Net assets with donor restrictions | $85,684,379 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $127,891,549 |
Grants Awarded
Over the last fiscal year, Amyotrophic Lateral Sclerosis Assn has awarded $15,118,914 in support to 159 organizations.
| Grant Recipient | Amount |
|---|---|
AMERICAN BRAIN FOUNDATION PURPOSE: SHELIA ESSEY AWARD; CLINICAL RESEARCH TRAINING FELLOWSHIP; CLINICAL SCIENTIST DEVELOPMENT AWARD; CRTS | $267,000 |
ALLEGHENY HEALTH NETWORK PURPOSE: ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH | $50,000 |
BAYLOR COLLEGE OF MEDICINE PURPOSE: TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM | $350,000 |
ATRIUM HEALTH FOUNDATION PURPOSE: ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH | $25,000 |
BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY PURPOSE: POST DOCTORAL FELLOWSHIP | $75,000 |
BRONX VETERANS MEDICAL RESEARCH FOUNDATION INC PURPOSE: TRIAL CAPACITY PROGRAM | $199,855 |