Amyotrophic Lateral Sclerosis Association

Organization Overview

Amyotrophic Lateral Sclerosis Association is located in Portland, OR. 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 01/2022, Amyotrophic Lateral Sclerosis Association employed 18 individuals. This organization is a subordinate organization within an affiliated group for tax-exemption purposes. Amyotrophic Lateral Sclerosis 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 01/2022, Amyotrophic Lateral Sclerosis Association generated $4.4m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 15.7% each year . All expenses for the organization totaled $3.0m during the year ending 01/2022. While expenses have increased by 7.6% per year over the past 7 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 2018, Amyotrophic Lateral Sclerosis Association has awarded 19 individual grants totaling $2,151,800. 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.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2022

Describe the Organization's Mission:

Part 3 - Line 1

LEADING THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL RESEARCH AND NATIONWIDE ADVOCACY WHILE ALSO EMPOWERING PEOPLE WITH ALS (LOU GEHRIGS DISEASE) AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT.

Describe the Organization's Program Activity:

Part 3 - Line 4a

OUTREACH AND ADVOCACYAS ONE OF 39 CHAPTERS AFFILIATED WITH THE NATIONAL ALS ASSOCIATION, THE OREGON AND SOUTHWEST WASHINGTON CHAPTER PROVIDES ONGOING FINANCIAL SUPPORT FOR THE NATIONAL ALS ASSOCIATION TO SUPPORT FEDERAL PUBLIC POLICY INITIATIVES TO IMPROVE THE LIVES OF FAMILIES LIVING WITH ALS, OUTREACH EFFORTS TO RAISE PUBLIC AWARENESS ABOUT ALS, AS WELL AS CUTTING EDGE GLOBAL RESEARCH WORKING TOWARD AN EFFECTIVE TREATMENT AND ULTIMATELY A CURE FOR ALS.THE ORGANIZATION CONTRIBUTED TO A NATIONAL EFFORT THAT FUNDED SIGNIFICANT PROJECTS TO UNDERSTAND THE CAUSE OF ALS, THE DISEASE MECHANISM, GENETICS, BIOMARKERS FOR ALS, ENVIRONMENTAL FACTORS, AND TRANSLATIONAL RESEARCH TO MOVE THERAPY IDEAS FROM THE LAB BENCH TO THERAPY. RESEARCH SUPPORT WENT TO 140 PLUS RESEARCH GRANTS AROUND THE GLOBE. PUBLIC POLICY ACCOMPLISHMENTS DURING THE YEAR ENDED JANUARY 31, 2022 INCLUDE ONLINE ADVOCACY OF PEOPLE WITH ALS TO CONNECT WITH LEGISLATORS IN WASHINGTON DC TO ADVOCATE FOR THE NATIONAL ALS REGISTRY, THE ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, PASSING THE ALS DISABILITY ACCESS ACT AND PROMOTING FEDERAL SUPPORT FOR ALS RESEARCH. THE ORGANIZATION PROVIDED OVER $456,000.00 TO SUPPORT THESE NATIONAL PUBLIC POLICY AND RESEARCH EFFORTS.AWARENESS EVENTS SPONSORED BY THE ORGANIZATION INCLUDE THE WALK TO DEFEAT ALS, HIKE TO DEFEAT ALS, SKI TO DEFEAT ALS, RIDE TO DEFEAT ALS, MAY ALS AWARENESS MONTH, CREATION OF PUBLIC SERVICE ANNOUNCEMENTS, MISSION CONNECTED SOCIAL MEDIA, AND CREATION OF VIDEOS THAT ILLUSTRATE WHAT ALS IS AND HOW CHAPTER SERVICES CAN HELP. THIS YEAR DUE TO COVID MOST ALL ACTIVITIES AFTER MARCH 2020 PIVOTED TO VIRTUAL. NOVEMBER NATIONAL FAMILY CAREGIVER MONTH ACTIVITIES SERVE AS OPPORTUNITIES TO BRING HOPE AND COMMUNITY TO PEOPLE WITH ALS AND THEIR FAMILIES. BY COMING TOGETHER AT AWARENESS EVENTS, PEOPLE WITH ALS AND THEIR FAMILIES AS WELL AS THOSE WHO HAVE LOST A LOVED ONE TO ALS FIND STRENGTH AND SUPPORT WITH ONE ANOTHER. THE LARGE NUMBER OF PEOPLE WHO PARTICIPATE IN THESE EFFORTS RAISE THE PROFILE OF ALS ACROSS THE CHAPTER AND ENGAGE COMMUNITY AWARENESS OF THE SERVICES AND RESOURCES AVAILABLE FROM THE OREGON AND SOUTHWEST WASHINGTON CHAPTER. RESEARCH IS A CRITICAL PART OF THE CHAPTER MISSION. AS PART OF THE EFFORT TO INCREASE THE KNOWLEDGE OF ALS AND THOSE AFFECTED, THE ORGANIZATION PROMOTES DEFEAT ALS EVENTS THAT PROMOTE THE NATIONAL ALS REGISTRY. THIS EFFORT IS VITAL TO UNDERSTAND THE FULL INCIDENCE AND PREVALENCE OF ALS ACROSS OREGON AND SOUTHWEST WASHINGTON SO THAT WE CAN IDENTIFY AND STRATEGICALLY PLAN TO SERVE AS MANY FAMILIES LIVING WITH ALS IN OUR CHAPTER TERRITORY AS POSSIBLE.


INDEPENDENCE PROGRAMS TO SUPPORT AND EMPOWER PEOPLE LIVING WITH ALS TO LIVE INDEPENDENTLY AND AS FULLY AS POSSIBLE, THE ORGANIZATION PROVIDES SERVICES THAT HELP PEOPLE WITH EQUIPMENT AND TOOLS TO ASSIST IN THEIR DAILY LIVES. THE MEDICAL EQUIPMENT LOAN PROGRAM PROVIDES EQUIPMENT SUCH AS MANUAL WHEELCHAIRS, POWER WHEELCHAIRS, BATHROOM EQUIPMENT AND PATIENT LIFTS TO FAMILIES FOR SHORT AND LONG-TERM LOAN. PARTNERING WITH MEDICAL EQUIPMENT COMPANIES ACROSS THE CHAPTER, THE ORGANIZATION SERVED 494 WITH MEDICAL EQUIPMENT LOAN REQUESTS DURING THE YEAR ENDED JANUARY 31, 2022. THE ORGANIZATION ALSO HAS A UNIQUE PROGRAM TO ASSIST FAMILIES LIVING WITH ALS IN ACCESSING AUGMENTATIVE AND ALTERNATIVE COMMUNICATION (AAC) EQUIPMENT AS WELL AS ADAPTIVE TECHNOLOGY FOR COMPUTER ACCESS AND ENVIRONMENTAL CONTROLS FOR PEOPLE WITH ALS. THIS PROGRAM PROVIDED SUPPORT, TRAINING, ASSISTIVE AND COMMUNICATION EQUIPMENT LOANS, TECHNICAL ASSISTANCE, AND HOME-BASED SUPPORT TO OVER 144 FAMILIES DURING THE YEAR ENDED JANUARY 31, 2022. THE CHAPTER GRANT PROGRAM IS DESIGNED TO PROVIDE FINANCIAL ASSISTANCE FOR FAMILIES LIVING WITH ALS. OVER $146,000 IN GRANTS WERE MADE TO 211 FAMILIES FOR WELL-BEING AND FAMILY SUPPORTS, COMMUNICATION SUPPORT, TRANSPORTATION ASSISTANCE, HOME MODIFICATIONS, AND MEDICAL EXPENSES. THE ORGANIZATIONS MISSION IS ALSO CARRIED ON THROUGH SERVICES PROVIDED BY THE NATIONAL ALS ASSOCIATION (NATIONAL). THE ALS CHAPTERS HAVE A REVENUE SHARING AGREEMENT WITH NATIONAL WHEREBY APPROXIMATELY 13.6% OF REVENUES NET OF CREDIT FOR SUPPORTING ALS RESEARCH AND PUBLIC POLICY ACTIVITIES ARE PAID TO THE NATIONAL ORGANIZATION.


ALS CLINICS AND CERTIFIED CENTER SUPPORT TO SUPPORT THE HIGHEST QUALITY HEALTHCARE FOR PEOPLE WITH ALS, THE ORGANIZATION PARTNERS WITH AND SUPPORTS COMMUNITY HEALTHCARE PROVIDERS IN OFFERING ALS SPECIALTY MULTIDISCIPLINARY CLINICS. THESE ONE-STOP SHOPS ARE EVIDENCE-BASED MODELS THAT PROMOTE COORDINATED CARE FOR PEOPLE WITH ALS AT THE THREE ALS ASSOCIATION CERTIFIED CENTERS OF EXCELLENCE AT THE PROVIDENCE ALS CENTER, THE VA PORTLAND HEALTH SYSTEM ALS CENTER, THE OHSU ALS CENTER AS WELL AS RECOGNIZED ALS TREATMENT CLINICS AT, KAISER SUNNYSIDE MEDICAL CENTER IN CLACKAMAS, AND ST. CHARLES MEDICAL CENTER IN BEND AND ASANTE IN MEDFORD AND GRANTS PASS. THE ORGANIZATION HAS ASSISTED WITH STAFFING, SUPPLIES, AND PROFESSIONAL EDUCATION FOR CLINIC PROVIDERS. DURING THE YEAR ENDED JANUARY 31, 2022, THE ORGANIZATION SUPPORTED 732 CLINIC APPOINTMENTS FOR FAMILIES WITH ALS. IN ADDITION, THE ORGANIZATION PROVIDED FUNDING FOR SPECIAL PROJECTS THAT FUNDED COUNSELING SERVICES AND DEVELOPED SERVICES FOR FAMILIES WITH FRONTOTEMPORAL DEMENTIA AND A CAREGIVER BOOTCAMP EDUCATION EVENT AT THE PROVIDENCE ALS CENTER. ADDITIONAL FUNDS WERE SHARED TO THE ALS CENTER AT OHSU TO SUPPORT NURSING STAFFING.


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Board, Officers & Key Employees

Name (title)Compensation
Lance Christian
Executive Dir.
$149,588
Amy Frazey
President
$0
Katherine Hart
Treasurer
$0
Alan Teo
Secretary
$0
Rocky Dallum
Vice President
$0
Kim Goslin
Director
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$201,132
Related organizations$0
Government grants $164,400
All other contributions, gifts, grants, and similar amounts not included above$4,000,160
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$4,365,692
Total Program Service Revenue$0
Investment income $25,507
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $6,561
Net Income from Fundraising Events -$29,159
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $4,368,601

Grants Awarded

Over the last fiscal year, Amyotrophic Lateral Sclerosis Association has awarded $1,057,800 in support to 4 organizations.

Grant RecipientAmount

THE ALS ASSOCIATION

Org PageRecipient Profile

Arlington, VA

PURPOSE: RESEARCH

$1,000,000

PORTLAND VA RESEARCH FND

Org PageRecipient Profile

Portland, OR

PURPOSE: RESEARCH

$24,800

PROVIDENCE ST VINCENT

Org PageRecipient Profile

Portland, OR

PURPOSE: ALS CLINIC SUPPORT

$18,000

OHSU

PURPOSE: ALS CLINIC SUPPORT

$15,000
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 1 grants that Amyotrophic Lateral Sclerosis Association has recieved totaling $10,000.

Awarding OrganizationAmount
David E Maguire Foundation Inc

Wilmington, DE

PURPOSE: GENERAL & UNRESTRICTED

$10,000
View Grant Recipient Profile

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