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Nonprofiteer
← AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION

Form 990 for tax year 2022

Filed by AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION.

Totals

Total revenue
$3,983,976
Total expenses
$4,341,253
Contributions and grants received
$3,972,126
Grants paid
$1,632,242
Program service revenue
$0
Investment income
$252,604
Other revenue
-$240,754
Total assets, end of year
$2,179,124
Total liabilities, end of year
$401,939
Net assets or fund balances, end of year
$1,777,185
Program services expenses (Part IX)
$3,801,058
Management and general expenses
$184,822
Fundraising expenses
$355,373
Program service expenses (Part III)
$3,801,058

Program services were 87.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $1,079,329

  • 1e · Government grants (contributions)

    $1,000,000

  • 1f · All other contributions, gifts and grants

    $1,892,797

  • 1g · Noncash contributions included above

    $133,436

  • 3 · Investment income

    total $17,504 · excluded $17,504

  • 7a · Gross sales of assets other than inventory

    securities $77,691 · other assets $750,013

  • 7b · Less cost or other basis and sales expenses

    securities $77,691 · other assets $514,913

  • 7c · Gain or loss

    securities $0 · other assets $235,100

  • 7d · Net gain or loss

    total $235,100 · excluded $235,100

  • 8a · Fundraising events: gross income

    $0

  • 8a · Fundraising events: contributions included on line 1c

    $1,079,329

  • 8b · Fundraising events: direct expenses

    $240,754

  • 8c · Net income from fundraising events

    total -$240,754 · excluded -$240,754

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,503,254 · program services $1,503,254

  • 2 · Grants to domestic individuals

    total $128,988 · program services $128,988

  • 5 · Compensation of officers, directors and key employees

    total $126,209 · program services $100,966 · management and general $12,622 · fundraising $12,621

  • 7 · Other salaries and wages

    total $935,879 · program services $656,091 · management and general $7,592 · fundraising $272,196

  • 8 · Pension plan contributions

    total $17,680 · program services $12,277 · management and general $32 · fundraising $5,371

  • 9 · Other employee benefits

    total $57,355 · program services $40,866 · management and general $1,075 · fundraising $15,414

  • 10 · Payroll taxes

    total $78,093 · program services $55,642 · management and general $1,464 · fundraising $20,987

  • 11b · Fees: legal

    total $12,758 · program services $12,128 · management and general $630

  • 11c · Fees: accounting

    total $72,620 · program services $43,881 · management and general $25,442 · fundraising $3,297

  • 11d · Fees: lobbying

    total $31,500 · management and general $31,500

  • 11f · Fees: investment management

    total $498 · management and general $498

  • 11g · Fees: other

    total $1,073,360 · program services $1,019,833 · management and general $52,916 · fundraising $611

  • 12 · Advertising and promotion

    total $3,033 · program services $2,427 · management and general $303 · fundraising $303

  • 13 · Office expenses

    total $60,402 · program services $48,321 · management and general $6,039 · fundraising $6,042

  • 14 · Information technology

    total $29,938 · program services $23,951 · management and general $2,993 · fundraising $2,994

  • 16 · Occupancy

    total $21,897 · program services $16,747 · management and general $2,575 · fundraising $2,575

  • 17 · Travel

    total $26,546 · management and general $26,546

  • 19 · Conferences, conventions and meetings

    total $102,578 · program services $82,035 · management and general $10,248 · fundraising $10,295

  • 22 · Depreciation, depletion and amortization

    total $11,329 · program services $9,381 · management and general $815 · fundraising $1,133

  • 23 · Insurance

    total $4,221 · program services $3,376 · management and general $422 · fundraising $423

  • 24a · Other expenses: MEDICAL EQUIPMENT

    total $32,000 · program services $32,000

  • 24e · All other expenses

    total $11,115 · program services $8,894 · management and general $1,110 · fundraising $1,111

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,004,107 · end of year $13,171

  • 2 · Savings and temporary cash investments

    beginning of year $655,529 · end of year $1,828,066

  • 3 · Pledges and grants receivable

    beginning of year $385,398 · end of year $333,333

  • 9 · Prepaid expenses and deferred charges

    beginning of year $12,198 · end of year $0

  • 10a · Land, buildings and equipment: cost or other basis

    $0

  • 10b · Land, buildings and equipment: accumulated depreciation

    $0

  • 10c · Land, buildings and equipment, net

    beginning of year $520,731 · end of year $0

  • 11 · Investments: publicly traded securities

    beginning of year $77,691 · end of year $0

  • 15 · Other assets

    beginning of year $0 · end of year $4,554

  • 17 · Accounts payable and accrued expenses

    beginning of year $91,609 · end of year $0

  • 18 · Grants payable

    beginning of year $299,831 · end of year $0

  • 25 · Other liabilities

    beginning of year $129,784 · end of year $401,939

  • 27 · Net assets without donor restrictions

    beginning of year $2,061,930 · end of year $1,777,185

  • 28 · Net assets with donor restrictions

    beginning of year $72,500 · end of year $0

Mission and programs · 2022

Mission

OUR MISSION IS 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.

Activities or mission (Part I)

IMPROVING THE LIVES OF PEOPLE LIVING WITH ALS, RAISING PROGRAM FUNDS & PARTICIPATING IN ADVOCACY.

  • CARE SERVICES: THE ALS ASSOCIATION FLORIDA CHAPTER PROVIDED A WIDE RANGE OF SERVICES AND PROGRAMS TO HELP PEOPLE LIVING WITH LOU GEHRIG'S DISEASE. THE CHAPTER SERVED 1,779 PATIENTS IN FISCAL YEAR 2023. PROGRAMS INCLUDED: 1) PARTNERSHIP WITH 12 MULTIDISCIPLINARY ALS CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDE IN-KIND STAFF SUPPORT, PROVIDING 2030 CLINIC VISITS; 2) A NETWORK OF TEN CARE SERVICES STAFF WHO HELPED PATIENTS, FAMILIES, AND CAREGIVERS NAVIGATE THE PHYSICAL, SOCIAL, EMOTIONAL, AND FINANCIAL EFFECTS OF ALS THROUGH CASE MANAGEMENT, SOCIAL WORK SERVICES, REFERRALS, ASSESSMENTS, EDUCATION AND GOVERNMENT/VETERAN BENEFITS/INSURANCE ADVOCACY; 3) 10 MONTHLY/BIMONTHLY VIRTUAL SUPPORT/RESOURCE GROUPS OFFERED TO ALL REGISTERED PATIENTS THROUGHOUT FLORIDA, 132 MEETINGS HELD IN FY2023; (CONTINUED ON SCHEDULE O)4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 435 PIECES OF DURABLE MEDICAL EQUIPMENT AND ASSISTIVE AUGMENTED COMMUNICATION DEVICES TO PATIENTS IN NEED; 5) ALS SPECIALTY HOME HEALTH COORDINATION; 6) FUNDING FOR 173 MONETARY GRANTS TO PATIENTS THAT PROVIDED 2202 HOURS OF RESPITE CARE, AS WELL AS HOME MODIFICATIONS, VAN MODIFICATIONS, TRANSPORTATION, MEDICAL EQUIPMENT NOT COVERED BY INSURANCE, AND OTHER FINANCIAL NEEDS; 7) THE RICK AND SHERRY MURRAY MEDICAL FUTURES SCHOLARSHIP FUND, PROVIDING SCHOLARSHIPS TO 1 STUDENT; 8) ONE HOPE AND HELP SYMPOSIUM, A FULL-DAY EVENT THAT FEATURED INFORMATIVE SESSIONS FOR PATIENTS, CAREGIVERS, AND SUPPORTERS OF PEOPLE WITH ALS AND INCLUDED IMPORTANT KEYNOTE SPEAKERS, A VENDOR FAIR, OPPORTUNITIES TO "ASK THE DOCS, AND AN AMBASSADOR OF HOPE. THE FY2023 EVENT WAS HELD IN ORLANDO AND 229 ATTENDED.

    Expenses $1,825,015 · Grants $128,988

  • RESEARCH: THE ALS ASSOCIATION FLORIDA CHAPTER, THROUGH THE ALS ASSOCIATION, HAS FUNDED RESEARCH AT SEVERAL RENOWNED RESEARCH CENTERS IN THE STATE INCLUDING THE MAYO CLINIC IN JACKSONVILLE, THE UNIVERSITY OF SOUTH FLORIDA IN TAMPA, THE UNIVERSITY OF FLORIDA IN GAINESVILLE AND JACKSONVILLE, THE UNIVERSITY OF MIAMI, AND HOLY CROSS. FLORIDA PATIENTS AND RESEARCHERS PARTICIPATE IN A VARIETY OF STUDIES INCLUDING BIOMARKER, DRUG DEVELOPMENT, GENETICS, DISEASE MECHANISM, OBSERVATIONAL/NATURAL HISTORY, AND SYMPTOM MANAGEMENT. THE CHAPTER ALSO WORK TO ENCOURAGE PEOPLE LIVING WITH ALS TO REGISTER WITH THE NATIONAL ALS REGISTRY THROUGH THE CENTERS FOR DISEASE CONTROL AND PREVENTION.

    Expenses $1,503,254 · Grants $1,503,254

  • AWARENESS: THROUGH PUBLIC OUTREACH, MEDIA RELATIONS, ONLINE PLATFORMS, CHAPTER COLLATERAL, AND SOCIAL MEDIA, THE ALS ASSOCIATION FLORIDA CHAPTER CONTINUED TO RAISE AWARENESS ABOUT ALS, THE PEOPLE WE SERVE, OUR PUBLIC POLICY GOALS, AND THE SEARCH FOR A TREATMENT AND CURE. OUR WEBSITE IS AN INVALUABLE SOURCE OF INFORMATION FOR THOSE LIVING WITH ALS AND PEOPLE LOOKING FOR THE LATEST INFORMATION ABOUT THE DISEASE. CHAPTER COLLATERAL SUCH AS BROCHURES, INFOGRAPHIC HANDOUTS, AND FLYERS PROVIDED OUR CONSTITUENTS IN THE COMMUNITIES WE SERVE WITH TIMELY INFORMATION ABOUT THE CHAPTER AND THE ACHIEVEMENT OF OUR MISSION PRIORITIES.

    Expenses $391,681

  • ADVOCACY: THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTS THE ALS ASSOCIATION'S ADVOCACY AGENDA INCLUDING APPROPRIATIONS, LEGISLATION, AND REGULATORY AFFAIRS.

    Expenses $81,108

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Hampton Graham

    CHAIRMAN

    Total calculated
    $0
    Hours/week
    3

  • John Cannistra

    IMMEDIATE PAST CHAIR

    Total calculated
    $0
    Hours/week
    3

  • Glenn Stambaugh

    VICE CHAIRMAN

    Total calculated
    $0
    Hours/week
    3

  • Troy Fields

    TREASURER

    Total calculated
    $0
    Hours/week
    3

  • Sharon Maybrook

    SECRETARY

    Total calculated
    $0
    Hours/week
    3

  • Alecia Bailey

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • Brian Chappell

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • Jo-Ann Clynch

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • John Collins

    MEMBER (TERM ENDED 12/14/22)

    Total calculated
    $0
    Hours/week
    3

  • Jeff Elbert

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • Brittany Harvey

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • Christine Hopkins Reagan

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • Melissa Spring

    MEMBER

    Total calculated
    $0
    Hours/week
    3

  • Dr Ashok Verma MD

    MEMBER

    Total calculated
    $0
    Hours/week
    0

  • Ray Carson

    PRESIDENT/CEO

    Total calculated
    $168,708
    From this org
    $163,308
    From related orgs
    $0
    Other
    $5,400
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $143,308
    Bonus
    $20,000
    Other
    $0
    Deferred
    $5,400
    Nontaxable benefits
    $0
    Filer's total
    $168,708

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Approval by the board or compensation committee
  • 7 · Other non-fixed payments

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 7
THE CHAPTER OFFERS AN EXECUTIVE INCENTIVE PROGRAM FOR THE PRESIDENT/CEO. THE PROGRAM OPENS FOR THE FISCAL YEAR ONCE THE CHAPTER MEETS CERTAIN CRITERIA AS SPECIFIED IN THE PROGRAM DOCUMENT AND APPROVED BY THE BOARD. ONCE THE INITIAL CRITERIA IS MET, THE PRESIDENT/CEO CAN EARN AN INCENTIVE AWARD RANGING FROM $0 TO $20,000 BY ACHIEVING OBJECTIVES OUTLINED IN THE PLAN. ACHIEVING "THRESHOLD LEVEL" (10 OF 15 OBJECTIVES MET) EARNS AN INCENTIVE OF $5,000; "TARGET LEVEL" (12 OF 15 OBJECTIVES MET) RESULTS IN AN INCENTIVE OF $10,000; AND "MAXIMUM LEVEL" (14 OF 15 OBJECTIVES MET) EARNS AN INCENTIVE OF $20,000.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Assets distributed on this return

Schedule N, as filed: what the organization did with its assets when it liquidated or dissolved, or disposed of more than a quarter of them, and who received them. A recipient with an EIN is usually a successor organization; filers also list expenses such as legal fees here.

  • PARKSIDE ESTATES LLC

    $750,013

    Disposition · LAND AND BUILDING · Aug 11, 2022

  • THE ALS ASSOCIATION

    $138,755

    Disposition · RECEIVABLES, NET PAYABLES · Nov 1, 2022 · 501(C)(3)

  • THE ALS ASSOCIATION

    $14,193

    Disposition · PREPAID EXPENSES AND DEPOSITS · Nov 1, 2022 · 501(C)(3)

  • THE ALS ASSOCIATION

    $7,957

    Disposition · EQUIPMENT · Nov 1, 2022 · 501(C)(3)

Provenance

Return type
form_990
Tax year
2022
Filed
4 December 2023
IRS schema version
2022v5.0
Source object
202303399349300405

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