Civic Intelligence

Amyotrophic Lateral Sclerosis Association

990 • Fiscal year 2015 • EIN 94-3124732

Feb 01, 2014 to Jan 31, 2015 • Filed on Sep 10, 2015

Organization ProfileALSAFL.ORG
3242 Parkside Center CircleTampa, FL 33619

(813) 637-9000

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

68th percentile

0.29x

Higher debt load relative to assets than 68% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Liabilities / Revenue

61st percentile

0.19x

Higher debt load relative to revenue than 61% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Net Margin

86th percentile

33%

Higher net margin than 86% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Top Officer Pay

68th percentile

$98,253

Higher top officer pay than 68% of similar nonprofits.

Top officer pay equals 2.3% of source-year revenue.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Asset Growth

95th percentile

91%

Faster asset growth than 95% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2014 to 2015

Revenue Growth

93rd percentile

85%

Faster revenue growth than 93% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2014 to 2015

Balance Sheet
Liabilities / Assets68th percentile

Assets

Up

$2,856,705

Up $1,361,946 (+91%) from 2014

Net Assets

Up

$2,027,490

Up $1,390,340 (+218%) from 2014

Liabilities

Down

$829,215

Down $28,394 (-3.3%) from 2014

Revenue And Expenses
Liabilities / Revenue61st percentileNet Margin86th percentile

Revenue

Up

$4,335,905

Up $1,997,610 (+85%) from 2014

Expenses

Up

$2,922,894

Up $860,163 (+42%) from 2014

Net Income

Up

$1,413,011

Up $1,137,447 (+413%) from 2014

Historical Trend

Balance Sheet Trend

Asset Growth95th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$3.0M$2.0M$1.0M$0Assets 2012: $1,043,908Liabilities 2012: $465,612Net Assets 2012: $578,2962012Assets 2013: $851,531Liabilities 2013: $489,945Net Assets 2013: $361,5862013Assets 2014: $1,494,759Liabilities 2014: $857,609Net Assets 2014: $637,1502014Assets 2015: $2,856,705Liabilities 2015: $829,215Net Assets 2015: $2,027,4902015Assets 2016: $2,379,043Liabilities 2016: $583,999Net Assets 2016: $1,795,0442016Assets 2017: $1,997,871Liabilities 2017: $533,988Net Assets 2017: $1,463,8832017Assets 2018: $1,833,809Liabilities 2018: $557,000Net Assets 2018: $1,276,8092018Assets 2019: $1,527,857Liabilities 2019: $476,843Net Assets 2019: $1,051,0142019Assets 2020: $1,150,493Liabilities 2020: $337,277Net Assets 2020: $813,2162020Assets 2021: $1,859,209Liabilities 2021: $845,187Net Assets 2021: $1,014,0222021Assets 2022: $2,655,654Liabilities 2022: $521,224Net Assets 2022: $2,134,4302022Assets 2023: $2,179,124Liabilities 2023: $401,939Net Assets 2023: $1,777,1852023

Highlighted filing

2015

Assets$2,856,705
Liabilities$829,215
Net Assets$2,027,490
Open 2015 Filing

Operations Trend

Revenue Growth93rd percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$6.0M$4.0M$2.0M$0-$2.0MRevenue 2012: $1,744,789Expenses 2012: $1,851,866Net Income 2012: -$107,0772012Revenue 2013: $1,655,148Expenses 2013: $1,871,858Net Income 2013: -$216,7102013Revenue 2014: $2,338,295Expenses 2014: $2,062,731Net Income 2014: $275,5642014Revenue 2015: $4,335,905Expenses 2015: $2,922,894Net Income 2015: $1,413,0112015Revenue 2016: $2,811,703Expenses 2016: $3,044,149Net Income 2016: -$232,4462016Revenue 2017: $2,489,184Expenses 2017: $2,820,345Net Income 2017: -$331,1612017Revenue 2018: $2,552,098Expenses 2018: $2,739,172Net Income 2018: -$187,0742018Revenue 2019: $2,269,459Expenses 2019: $2,495,254Net Income 2019: -$225,7952019Revenue 2020: $1,883,335Expenses 2020: $2,121,133Net Income 2020: -$237,7982020Revenue 2021: $2,660,252Expenses 2021: $2,454,446Net Income 2021: $205,8062021Revenue 2022: $4,199,844Expenses 2022: $3,074,863Net Income 2022: $1,124,9812022Revenue 2023: $3,983,976Expenses 2023: $4,341,253Net Income 2023: -$357,2772023

Highlighted filing

2015

Revenue$4,335,905
Expenses$2,922,894
Net Income$1,413,011
Open 2015 Filing
Jump To
Filing Snapshot
Filing Period
Feb 1, 2014 to Jan 31, 2015
Signed
Sep 10, 2015
Return Version
2014v5.0
Gross Receipts
$4,471,209
Mission and Program Overview

Mission

Leading the fight to treat and cure als through global research and nationwide advocacy while also empowering people with lou gehrig's disease and their families to live fuller lives by providing them with compassionate care and support.

Improving the lives of patients living with als (lou gehrig's disease)

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$203,225$1,393,614▲ $1,190,389
Land, Buildings, and Equipment, Net$706,027$712,733▲ $6,706
Cash and Non-Interest-Bearing Accounts$60,781$506,647▲ $445,866
Pledges and Grants Receivable$521,227$240,889▼ $280,338
Prepaid Expenses and Deferred Charges$2,709$2,095▼ $614
Intangible Assets$790$727▼ $63
Total Assets$1,494,759$2,856,705▲ $1,361,946
Liabilities
Grants Payable$411,146$419,098▲ $7,952
Mortgage Notes Payable Secured by Investment Property$328,875$300,057▼ $28,818
Accounts Payable and Accrued Expenses$64,967$75,013▲ $10,046
Other Liabilities$46,810$31,336▼ $15,474
Deferred Revenue$5,811$3,711▼ $2,100
Total Liabilities$857,609$829,215▼ $28,394
Net Assets / Fund Balance
Unrestricted Net Assets$441,992$1,751,422▲ $1,309,430
Temporarily Rstr Net Assets$195,158$276,068▲ $80,910
Total Net Assets Fund Balance$637,150$2,027,490▲ $1,390,340
Total Liabilities and Net Assets / Fund Balance$1,494,759$2,856,705▲ $1,361,946

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$115,025$375,980$491,005
Buildings$372,708$105,561$478,269
Land$225,000-$225,000

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2014$195,908$212,777--$276,068
2013$105,422$204,090--$195,908
2012$92,841$159,402--$105,422
2011$98,507$195,439--$92,841
2010$215,493$281,465--$98,507
Compensation and Service Providers
Top Officer Pay68th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Kimberley HannaPresident/CEOFT$89,190$9,063$98,253

Board Members and Trustees

NameTitle
Hiram GreenChairman
Tim CummingsVice Chairman
Dewayne StandiferTrustee
Erin Malone EsqTrustee
Glenn StambaughTrustee
Jan BergerTrustee
John CannistraTrustee
Ken GriffinTrustee
Kevin ConnTrustee
Renate ArmitageTrustee
Robert MillerTrustee
Sandra TorresTrustee
Warren NelsonTrustee
Wendy BitnerTrustee

Highest Paid Contractors

ContractorServicesLocationCompensation
University Medical Service AssociationClinical Services12901 BRUCE B DOWNS BLVD, Tampa, FL 33612$272,005
University Of FloridaClinical Services219 GRINTER HALL, Gainesville, FL 32611$186,490
University Of MiamiClinical Services1252 MEMORIAL DR, Coral Gables, FL 33146$154,799
Mayo ClinicClinical Services4500 SAN PABLO RD, Jacksonville, FL 32224$145,954
Revenue and Support

Revenue Composition

Contributions and Grants
$4,410,747
Program Service Revenue
$0
Investment Income
$1,675
Other Revenue
$-76,517
All Other Contributions
$1,770,301
Change in Net Assets
$1,413,011

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
Yes

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Other Non Cash Contri Table53$73,247Fair Market Value
Other Non Cash Contri Table1$10,891Fair Market Value
Other Non Cash Contri Table1$120Fair Market Value
Total Noncash Contributions55$84,258-

Audited Revenue Reconciliation

Revenue per Audited Statements
$4,313,234
Revenue Not Reported on Financial Statements
$22,671
Revenue Not Reported on Form 990
$135,304
Other Revenue Adjustments
$22,671
Total Revenue per Audited Statements
$4,448,538
Total Revenue per Form 990
$4,335,905
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,429,275
Salaries, Compensation, and Employee Benefits$902,192
Grants and Similar Amounts Paid$591,427
Total Fundraising Expense$279,642
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Other$948,003$30,348$3,235$981,586
Other Salaries and Wages$468,463$17,011$188,841$674,315
Grants to Domestic Orgs$528,989--$528,989
Office Expenses$187,794$23,292-$211,086
Current Officers, Directors, Trustees, and Key Employees$69,457$9,922$19,845$99,224
Payroll Taxes$47,553$2,258$17,916$67,727
Grants to Domestic Individuals$62,438--$62,438
Other Employee Benefits$41,717$1,771$17,438$60,926
Depreciation Depletion$30,277$13,179$4,829$48,285
Travel$38,087$5,923$1,219$45,229
Conferences and Meetings$21,137$289$19,117$40,543
Information Technology$32,007$4,001$4,001$40,009
Fees for Services Accounting-$29,199-$29,199
Occupancy$18,555$2,318$2,319$23,192
Insurance$4,783$598$598$5,979
All Other Expenses$3,452$431$284$4,167
Total Functional Expenses$2,502,712$140,540$279,642$2,922,894

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$3,058,197
Expenses per Audited Statements$2,922,894
Total Expenses per Form 990$2,922,894
Expenses Not Reported on Form 990$135,303
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
The Als AssociationWashington, DC501(c)(3)Research$476,239
Usf Foundation IncTampa, FL501(c)(3)Center Support$20,000
Mayo Clinic JacksonvilleJacksonville, FL501(c)(3)Center Support$13,100
University of MiamiCoral Gables, FL501(c)(3)Center Support$13,100
Lee Memorial Health CenterFt Myers, FL501(c)(3)Center Support$6,550
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$110,701
Fundraising Gross Income$8,440
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk to Defeat Als Events$1,377,600-$81,736-
Ride to Defeat Als Events$244,412$8,440$11,238$-2,798
Total Events$1,622,012$8,440$110,701$-102,261
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Due to National Als$31,336
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11

“The 990 is reviewed by the finance committee of the board prior to filing with the irs. The finance committee presents the 990 to the full board. The 990 is then provided to the full board prior to filing.”

Form 990, Part VI, Section B, Line 12C

“Board members are asked to sign a conflict of interest policy annually. Board members with a conflict on any voting matters recuse themselves from the vote.”

Form 990, Part VI, Section B, Line 15

“The process for determining the executive director's salary is as follows: (1) the ed's performance is reviewed by the chairman and a written evaluation is provided to the ed and to the executive committee; (2) salary is determined and documented by using comparable data from nonprofits of similar mission, budget size, and geographic region, including sister als chapters, with allowances made for differences in size and location; (3) the executive committee makes a recommendation to the board for approval; and (4) the board's consideration and approval of the compensation is documented in the boards minutes. The process for determining key employee's salary is as follows: (1) the employee's performance is reviewed by the executive director; and (2) salary is determined and documented by using comparable data from nonprofits of similar mission, budget size, and geographic region.”

Form 990, Part VI, Section C, Line 19

“The organization makes its governing documents, conflict of interest policy, and financial statements available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
Amyotrophic Lateral Sclerosis Association
EIN
94-3124732
Phone
8136379000
Address
3242 PARKSIDE CENTER CIRCLE, TAMPA, FL 33619
Doing Business As
The Als Association Florida Chapter Inc

Signing Officer

Name
Kimberley Hanna
Title
President/CEO
Phone
8136379000
Signed
2015-09-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Kimberley Hanna
Formed
1987
Legal Domicile
Fl
Voting Board Members
13
Independent Board Members
13
Employees
22
Volunteers
1,000

Preparer

Firm
Cbiz Mhm LLC
Address
13577 FEATHER SOUND DR STE 400, CLEARWATER, FL 33762
Preparer
Betty Isler CPA
Phone
7275721400
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Clinical services: program service expenses 923,086. Management and general expenses 0. Fundraising expenses 0. Total expenses 923,086. Payroll administration: program service expenses 0. Management and general expenses 16,803. Fundraising expenses 0. Total expenses 16,803. Other professional fees: program service expenses 24,917. Management and general expenses 13,545. Fundraising expenses 3,235. Total expenses 41,697.”

FORM 990, PART XI, LINE 9:

“Noncash donations reported on form 990 -22,671.”

FORM 990, PART XII, LINE 2C:

“The financial statement audit and selection of the independent cpa firm is managed by the executive director and overseen by the finance committee of the board. The cpa firm presents the audit and 990 to the finance committee. The executive director is excused from part of the meeting to allow the process to be fully independent. The finance comittee then presents the audit and 990 to the full board. The cpa firm is chosen from three (3) independent proposals when a change in firm is made.”

Financial Statement Notes

PART V, LINE 4:

“The organization's temporarily restricted endowments consist of net assets subject to donor imposed stipulations that may or will be met, either by actions of the association and/or passage of time.”

PART X, LINE 2:

“The association has been recognized by the internal revenue service as a tax-exempt organization described in section 501(c)(3) of the internal revenue code of 1986. Income earned in furtherance of the association's tax-exempt purpose is exempt from federal and state income taxes. The association is treated as a publicly supported organization, and not as a private foundation. The association has adopted the provisions of asc topic 740 accounting for uncertainty in income taxes and does not believe it has any material income tax exposure relating to uncertain tax positions. The association's income tax filings for periods after the fiscal year ended january 31, 2011 remain subject to examination. Beginning with the year ended january 31, 2009, the association received rent from a tenant, which is considered unrelated taxable business income. For the years ended january 31, 2015 and 2014, this activity generated an income tax liability of $1,175 and $986, respectively.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Event expenses deducted on part viii, line 8b 110,701. Rental expenses deducted on part viii, line 6b 24,603.”

PART XI, LINE 4B - OTHER ADJUSTMENTS:

“Noncash contributions 22,671.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Event expenses deducted on part viii, line 8b 110,700. Rental expenses deducted on part viii, line 6b 24,603.”

Raw XML AppendixShowing 400 of 753 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Desc0PATIENT 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 1,109 PATIENTS. PROGRAMS INCLUDED: 1) SPONSORSHIP OF 5 ALS MULTIDISCIPLINARY CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDED BOTH FINANCIAL SUPPORT AND IN-KIND STAFFING SUPPORT; 2) A NETWORK OF 8 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 BY PROVIDING 15,872 PATIENT INTERACTIONS, 109 HOME VISITS, AND 84 PHONE ASSESSMENTS TO PATIENTS AND FAMILIES; 3) SUPPORT/RESOURCE GROUPS IN 18 STATEWIDE LOCATIONS; 4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 123 PIECES OF DURABLE MEDICAL EQUIPMENT AND 49 ASSISTIVE AUGMENTED COMMUNICATION DEVICES TO PATIENTS IN NEED; 5) SURVIVING SPOUSES SOCIAL RENEWAL PROGRAMS; 6) ALS SPECIALTY HOME HEALTH COORDINATION; 7) A KIDS CARE PROGRAM, PROVIDING 17 PACKETS AND RESOURCES FOR CHILDREN WITH FAMILY MEMBERS WHO ARE SUFFERING FROM THE DISEASE; 8) FUNDING FOR 43 MONETARY GRANTS TO PATIENTS THAT PROVIDED 457 HOURS OF RESPITE CARE, HOME MODIFICATIONS, VAN MODIFICATIONS, TRANSPORTATION, MEDICAL EQUIPMENT NOT COVERED BY INSURANCE, AND OTHER FINANCIAL NEEDS; 9) THE RICK AND SHERRY MURRAY MEDICAL FUTURES SCHOLARSHIP FUND, PROVIDING SCHOLARSHIPS TO 2 STUDENTS; AND 10) THE HOPE AND HELP FLORIDA RESEARCH SERIES, A WEBINAR SERIES THAT DELIVERS INFORMATION ABOUT THE LATEST RESEARCH DEVELOPMENTS TAKING PLACE IN FLORIDA AND FEATURING THE STATE'S TOP ALS RESEARCHERS WHO PRESENT DIRECTLY TO ATTENDEES AND ANSWER QUESTIONS LIVE ONLINE AND VIA TELEPHONE.
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IRS990/MissionDesc0LEADING THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL RESEARCH AND NATIONWIDE ADVOCACY WHILE ALSO EMPOWERING PEOPLE WITH LOU GEHRIG'S DISEASE AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT.
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IRS990/ProgSrvcAccomActy2Grp/Desc0AWARENESS: THROUGH PUBLIC OUTREACH, MEDIA RELATIONS, AND ONLINE PLATFORMS, THE ALS ASSOCIATION FLORIDA CHAPTER CONTINUED TO RAISE AWARENESS ABOUT ALS, THE PEOPLE WE SERVE, OUR PUBLIC POLICY GOALS, AND THE SEARCH FOR A CURE, INCLUDING: 1) OUR WEBSITE, A DEFINITIVE SOURCE OF INFORMATION FOR THOSE BATTLING ALS AND PEOPLE LOOKING FOR THE LATEST INFORMATION ABOUT THE DISEASE; 2) SOCIAL MEDIA OUTREACH, WHICH INCLUDED FACEBOOK AND TWITTER; 3) CUTTING-EDGE MARKETING CAMPAIGNS, WHICH INCLUDED WALK IN THEIR SHOES, LOU GEHRIG LOVE LETTERS, ALS ON THE RUN, AND FROZEN IN TIME; 4) A STATEWIDE MARKETING CAMPAIGN DESIGNED TO EDUCATE PATIENTS AND HEALTHCARE PROVIDERS ABOUT THE ALS MULTIDISCIPLINARY CLINICS IN THE STATE; 5) PUBLIC AND HEALTHCARE PROVIDER EDUCATION; 6) STATEWIDE AWARENESS EVENTS SUCH AS OUR PARTNERSHIP WITH MINOR AND MAJOR LEAGUE BASEBALL TEAMS, FILM FESTIVALS AND THEATRICAL EVENTS SPOTLIGHTING ALS, AND HEALTH FAIRS AND PROFESSIONAL SEMINARS; 7) OUR NEWSMAGAZINE, ALS ACCESS, WHICH PROVIDED OUR CONSTITUENTS IN THE COMMUNITIES WE SERVE WITH TIMELY INFORMATION ABOUT THE CHAPTER AND THE ACHIEVEMENT OF OUR MISSION PRIORITIES; 8) E-COMMUNICATION CAMPAIGNS DEVELOPED TO FURTHER OUR PUBLIC POLICY, CARE SERVICES AND GLOBAL RESEARCH GOALS; AND 9) PARTICIPATION IN ICE BUCKET CHALLENGE MEDIA OPPORTUNITIES, AWARENESS EVENTS, AND SOCIAL MEDIA ACTIVITIY.
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IRS990/ProgSrvcAccomActy3Grp/Desc0RESEARCH: THE ALS ASSOCIATION FLORIDA CHAPTER, THROUGH THE ALS ASSOCIATION, CONTRIBUTED TO RESEARCH AND PARTICIPATED IN THE GLOBAL NETWORK, WHICH HAS INCREASED THE NUMBER OF SCIENTISTS WORKING ON ALS, ADVANCED NEW DISCOVERIES AND TREATMENTS, AND SHED LIGHT ON THE COMPLEX GENETIC AND ENVIRONMENTAL FACTORS INVOLVED IN ALS. THE ALS ASSOCIATION HAS COMMITTED $99 MILLION TO FIND EFFECTIVE TREATMENTS AND A CURE FOR LOU GEHRIG'S DISEASE. THERE ARE THREE (3) MAJOR ALS RESEARCH CENTERS IN FLORIDA: THE MAYO CLINIC (JACKSONVILLE), THE UNIVERSITY OF MIAMI (MIAMI), AND THE UNIVERSITY OF SOUTH FLORIDA (TAMPA). FLORIDA PATIENTS AND RESEARCHERS HAVE PARTICIPATED IN ALL OF THE MAJOR TRIALS THAT HAVE RECENTLY COME THROUGH THE ALS PIPELINE INCLUDING: 1) DRUG INTERVENTIONS; 2) DEVICE TRIALS; 3) BIOMARKERS; 4) NUTRITION; AND 5) GENETICS.
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0ADVOCACY: THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTED THE ALS ASSOCIATION'S ADVOCACY AGENDA, WHICH CONSISTS OF THREE PRIORITIES INCLUDING APPROPRIATIONS, LEGISLATION, AND REGULATORY AFFAIRS, AS FOLLOWS:APPROPRIATIONS - THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTED THE ALS ASSOCIATION'S NATIONAL APPROPRIATION EFFORTS, INCLUDING APPROPRIATION OF $10 MILLION TO CONTINUE THE ALS REGISTRY AND APPROPRIATION OF $10 MILLION FOR THE DEPARTMENT OF DEFENSE (DOD) ALS RESEARCH PROGRAM. ONGOING APPROPRIATIONS ARE NEEDED TO CONTINUE THE REGISTRY, COORDINATE FEDERAL EFFORTS TO COMBAT ALS, HELP PEOPLE ENROLL IN THE REGISTRY AND CONDUCT OUTREACH ACTIVITIES. FUNDING IS USED TO LINK THE REGISTRY TO EPIDEMIOLOGICAL STUDIES AND RESEARCH INTO BIOMARKERS, RISK FACTORS, AND CLINICAL STUDIES TO IDENTIFY NEW TREATMENTS. THE DOD RESEARCH PROGRAM WAS DESIGNED TO TRANSLATE BASIC SCIENCE INTO NEW TREATMENTS FOR ALS BY FUNDING INNOVATIVE PROJECTS THAT FILL IN THE GAPS AND COMPLEMENT RESEARCH AT THE NIH. THIS PROGRAM IS PARTICULARLY RELEVANT AS MILITARY VETERANS ARE TWICE AS LIKELY TO BE DIAGNOSED WITH ALS AS THE GENERAL POPULATION.LEGISLATION - THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTED THE ALS ASSOCIATION'S NATIONAL LEGISLATION EFFORTS, INCLUDING EFFORTS TO CO-SPONSOR AND PASS THE MODDERN CURES ACT (H.R. 3116). THE MODDERN CURES ACT SEEKS TO ACCELERATE THE DEVELOPMENT OF NEW DIAGNOSTIC TOOLS AND A TREATMENT FOR LOU GEHRIG'S DISEASE. THE LEGISLATION WOULD CREATE A NEW CLASS OF DRUGS TO ADDRESS PATENT-RELATED BARRIERS BY MAKING A GREATER NUMBER OF COMPOUNDS ECONOMICALLY VIABLE AND WORTH PURSUING.REGULATIONS - THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTED THE ALS ASSOCIATION'S NATIONAL REGULATION EFFORTS. THE CENTERS FOR MEDICARE & MEDICAID (CMS) ISSUED SEVERAL DIFFERENT POLICY CHANGES REGARDING COVERAGE FOR SPEECH GENERATING DEVICES (SGDS) THAT CREATED CONFUSION AND RAISED SIGNIFICANT CONCERNS WITHIN THE ALS COMMUNITY. THE ALS ASSOCIATION HAS WORKED ON THESE ISSUES SINCE THEY FIRST AROSE. IN SEPTEMBER 2014, ADVOCATES IN FLORIDA REACHED OUT TO MEMBERS OF CONGRESS TO SIGN A LETTER TO BE DELIVERED TO THE CMS ADMINISTRATOR OUTLINING CONCERNS AND REQUESTING ACTION.ADVOCACY ACTIVITIES:- MAY 2014 - ANNUAL NATIONAL ALS ADVOCACY DAYS AND PUBLIC POLICY CONFERENCE IN WASHINGTON, DC. ADVOCATES MET WITH FLORIDA'S TWO (2) SENATORS AND 27 REPRESENTATIVES IN THEIR WASHINGTON OFFICES.- JULY 2014 PARTICIPATED IN A NATIONAL DISCUSSION ON IMPROVING ACCESS TO EXPERIMENTAL THERAPIES. A PERSON LIVING WITH ALS FROM FLORIDA IS PARTICIPATING ON THE FDA ADVISORY GROUP. THE FDA AGREED TO DEVELOP AN INDUSTRY GUIDANCE TO SPEED THE REVIEW AND APPROVAL PROCESS.- AUGUST 2014 - PARTICIPATED IN A "PATIENTS' PERSPECTIVE" ROUNDTABLE DISCUSSION ON DISEASES WITH UNMET NEED AND POTENTIAL SOLUTIONS SPONSORED BY REP. GUS BILIRAKIS (R-FL).- JANUARY 2015 - PARTICIPATED IN ANNUAL NATIONAL FLY-IN IN WASHINGTON, DC. AND 5 CONGRESSIONAL OFFICES
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Filings

Displayed year

2015 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,856,705
Liabilities
$829,215
Net assets
$2,027,490
Revenue
$4,335,905
Expenses
$2,922,894
Net income
$1,413,011
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2023Detailed filing. Detailed filing data is available for this year.$2.18$0.40$1.78$3.98$4.34$0.36
2022Detailed filing. Detailed filing data is available for this year.$2.66$0.52$2.13$4.20$3.07$1.12
2021Detailed filing. Detailed filing data is available for this year.$1.86$0.85$1.01$2.66$2.45$0.21
2020Detailed filing. Detailed filing data is available for this year.$1.15$0.34$0.81$1.88$2.12$0.24
2019Detailed filing. Detailed filing data is available for this year.$1.53$0.48$1.05$2.27$2.50$0.23
2018Detailed filing. Detailed filing data is available for this year.$1.83$0.56$1.28$2.55$2.74$0.19
2017Detailed filing. Detailed filing data is available for this year.$2.00$0.53$1.46$2.49$2.82$0.33
2016Detailed filing. Detailed filing data is available for this year.$2.38$0.58$1.80$2.81$3.04$0.23
2015Detailed filing. Detailed filing data is available for this year.$2.86$0.83$2.03$4.34$2.92$1.41
2014Summary only. Only limited summary data is available for this year.$1.49$0.86$0.64$2.34$2.06$0.28
2013Summary only. Only limited summary data is available for this year.$0.85$0.49$0.36$1.66$1.87$0.22
2012Summary only. Only limited summary data is available for this year.$1.04$0.47$0.58$1.74$1.85$0.11