Civic Intelligence

Amyotrophic Lateral Sclerosis Association

990 • Fiscal year 2017 • EIN 94-3124732

Feb 01, 2016 to Jan 31, 2017 • Filed on Jun 11, 2017

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

0.27x

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

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Liabilities / Revenue

65th percentile

0.21x

Higher debt load relative to revenue than 65% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Net Margin

18th percentile

-13%

Higher net margin than 18% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Top Officer Pay

75th percentile

$114,691

Higher top officer pay than 75% of similar nonprofits.

Top officer pay equals 4.6% of source-year revenue.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Asset Growth

8th percentile

-16%

Faster asset growth than 8% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2016 to 2017

Revenue Growth

19th percentile

-11%

Faster revenue growth than 19% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2016 to 2017

Assets

Down

$1,997,871

Down $381,172 (-16%) from 2016

Net Assets

Down

$1,463,883

Down $331,161 (-18%) from 2016

Liabilities

Down

$533,988

Down $50,011 (-8.6%) from 2016

Revenue

Down

$2,489,184

Down $322,519 (-11%) from 2016

Expenses

Down

$2,820,345

Down $223,804 (-7.4%) from 2016

Net Income

Down

-$331,161

Down $98,715 (-42%) from 2016

Historical Trend

Balance Sheet Trend

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

2017

Assets$1,997,871
Liabilities$533,988
Net Assets$1,463,883

Operations Trend

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

2017

Revenue$2,489,184
Expenses$2,820,345
Net Income-$331,161
Jump To
Filing Snapshot
Filing Period
Feb 1, 2016 to Jan 31, 2017
Signed
Jun 11, 2017
Return Version
2016v3.0
Gross Receipts
$2,544,108
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 people living with als, raising research funds & participating in advocacy.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$1,381,410$1,098,236▼ $283,174
Land, Buildings, and Equipment, Net$653,510$593,825▼ $59,685
Pledges and Grants Receivable$214,315$213,969▼ $346
Cash and Non-Interest-Bearing Accounts$127,130$80,271▼ $46,859
Investments in Publicly Traded Securities$0$4,876▲ $4,876
Prepaid Expenses and Deferred Charges$2,015$4,055▲ $2,040
Accounts Receivable$0$2,040▲ $2,040
Total Assets$2,379,043$1,997,871▼ $381,172
Other Assets Total$663$599▼ $64
Liabilities
Mortgage Notes Payable Secured by Investment Property$269,873$244,259▼ $25,614
Grants Payable$133,128$133,128→ $0
Other Liabilities$84,310$83,674▼ $636
Accounts Payable and Accrued Expenses$93,988$72,927▼ $21,061
Deferred Revenue$2,700--
Total Liabilities$583,999$533,988▼ $50,011
Net Assets / Fund Balance
Unrestricted Net Assets$1,605,590$1,369,280▼ $236,310
Temporarily Rstr Net Assets$189,454$94,603▼ $94,851
Total Net Assets Fund Balance$1,795,044$1,463,883▼ $331,161
Total Liabilities and Net Assets / Fund Balance$2,379,043$1,997,871▼ $381,172

Asset Categories

AssetBook ValueDepreciationBasis
Buildings$354,522$131,087$485,609
Equipment$14,303$414,335$428,638
Land$225,000-$225,000

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2016$189,454$22,958--$94,603
2015$276,068$105,560--$189,454
2014$195,908$212,777--$276,068
2013$105,422$204,090--$195,908
2012$92,841$159,402--$105,422
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Kimberley HannaPresident/CEOFT$105,011$9,680$114,691

Board Members and Trustees

NameTitle
Tim CummingsChairman
Hiram GreenImmediate Past Chairman
Sandra TorresVice Chairman
Dewayne StandiferTrustee
Hampton GrahamTrustee
Jo-ann ClynchTrustee
John CannistraTrustee
Ken GriffinTrustee
Kevin ConnTrustee
Renate ArmitageTrustee
Robert MillerTrustee
Warren NelsonTrustee
Wendy BitnerTrustee
Jan BergerSecretary
Glenn StambaughTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Mayo Clinic In FloridaClinical Services4500 SAN PABLO RD S, Jacksonville, FL 32224-1865$234,636
University Of MiamiClinical Services1120 NW 14TH ST STE 1315, Miami, FL 33136$212,057
University Medical Services AssociationClinical Services12901 BRUCE B DOWNS BLVD MDC 55, Tampa, FL 33612$184,636
Revenue and Support

Revenue Composition

Contributions and Grants
$2,516,946
Program Service Revenue
$0
Investment Income
$1,467
Other Revenue
$-29,229
All Other Contributions
$577,394
Change in Net Assets
$-331,161

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$49,400Fair Market Value
Securities Publicly Traded1$4,876Stock Quote
Total Noncash Contributions54$54,276-

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,489,184
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$54,924
Total Revenue per Audited Statements
$2,544,108
Total Revenue per Form 990
$2,489,184
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,287,101
Other Expenses$1,068,289
Grants and Similar Amounts Paid$464,955
Total Fundraising Expense$257,098
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$773,325$38,056$166,861$978,242
Fees for Services Other$452,732$966$7,869$461,567
Grants to Domestic Orgs$390,736--$390,736
Office Expenses$282,988$12,131$13,418$308,537
Current Officers, Directors, Trustees, and Key Employees$92,622$11,578$11,578$115,778
Other Employee Benefits$79,580$3,391$16,111$99,082
Payroll Taxes$74,338$4,213$15,448$93,999
Grants to Domestic Individuals$74,219--$74,219
Travel$63,040$283$2,436$65,759
Depreciation Depletion$53,229$4,620$6,428$64,277
Conferences and Meetings$32,493$8,852$8,954$50,299
Information Technology$37,533$4,691$5,168$47,392
Fees for Services Accounting$8,301$33,204-$41,505
Occupancy$17,105$2,141$2,141$21,387
Insurance$4,660$582$582$5,824
Other Expenses$612$77$77$766
Fees for Services Legal$140$560-$700
All Other Expenses$223$26$27$276
Total Functional Expenses$2,037$0$8,149$10,186

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,875,269
Expenses per Audited Statements$2,820,345
Total Expenses per Form 990$2,820,345
Expenses Not Reported on Form 990$54,924
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
The Als AssociationWashington, DC501(c)(3)Research$331,436
Usf Foundation IncTampa, FL501(c)(3)Center Support$33,100
Mayo ClinicJacksonville, FL501(c)(3)Center Support$13,100
University of MiamiCoral Gables, FL501(c)(3)Center Support$13,100
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$41,720
Fundraising Gross Income$5,845
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk to Defeat Als Events$1,332,514-$10,685-
Ride to Defeat Als Events$162,883$5,845$22,544$-16,699
Total Events$1,495,397$5,845$41,720$-35,875
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$83,674
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 11B

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 chapter 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
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
2017-06-11
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Kimberley Hanna
Formed
1987
Legal Domicile
Fl
Voting Board Members
14
Independent Board Members
14
Employees
30
Volunteers
1,886

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 407,499. Management and general expenses 0. Fundraising expenses 647. Total expenses 408,146. Payroll administration: program service expenses 3,722. Management and general expenses 212. Fundraising expenses 768. Total expenses 4,702. Other professional fees: program service expenses 41,511. Management and general expenses 754. Fundraising expenses 6,454. Total expenses 48,719.

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 chapter'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 amyotrophic lateral sclerosis association and its affiliated chapters, including the association, have been recognized collectively 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, through the collective exemption described previously, is treated as a publicly supported organization, and not as a private foundation. The association has adopted the provisions of asc topic 740 relating to 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, 2013 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 year ended january 31, 2017, this activity generated income tax expense of $848. For the year ended january 31, 2016, this activity did not generate an income tax liability.

PART XI, LINE 2D - OTHER ADJUSTMENTS:

Event expenses deducted on part viii, line 8b 41,720. Rental expenses deducted on part viii, line 6b 13,204.

PART XI, LINE 4B - OTHER ADJUSTMENTS:

NONCASH CONTRIBUTIONS

PART XII, LINE 2D - OTHER ADJUSTMENTS:

Event expenses deducted on part viii, line 8b 41,720. Rental expenses deducted on part viii, line 6b 13,204.

Raw XML AppendixShowing 400 of 768 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 1,363 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 NINE 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 40,696 PATIENT INTERACTIONS, 36 HOME VISITS, AND 96 PHONE ASSESSMENTS TO PATIENTS AND FAMILIES; 3) SUPPORT/RESOURCE GROUPS IN 19 STATEWIDE LOCATIONS; 4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 226 PIECES OF DURABLE MEDICAL EQUIPMENT AND 29 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 14 PACKETS AND RESOURCES FOR CHILDREN WITH FAMILY MEMBERS WHO ARE SUFFERING FROM THE DISEASE; 8) FUNDING FOR 124 MONETARY GRANTS TO PATIENTS THAT PROVIDED 2,797 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 3 STUDENTS; AND 10) 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 EXPERTS, AND AN AMBASSADOR OF HOPE AWARDS LUNCHEON ATTENDED BY 233 CONSTITUENTS.
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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, 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 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 ALS ACCESS, OUR NEWSMAGAZINE, PROVIDED OUR CONSTITUENTS IN THE COMMUNITIES WE SERVE WITH TIMELY INFORMATION ABOUT THE CHAPTER AND THE ACHIEVEMENT OF OUR MISSION PRIORITIES. E-COMMUNICATION CAMPAIGNS SUCH AS OUR MONTHLY EMAIL NEWSLETTERS, END OF YEAR GIVING CAMPAIGN, ALS AWARENESS MONTH CAMPAIGN, AND OTHER FUNDRAISING CAMPAIGNS WERE DEVELOPED TO FURTHER OUR PUBLIC POLICY, CARE SERVICES AND GLOBAL RESEARCH GOALS. STATEWIDE AWARENESS EVENTS SUCH AS OUR PARTNERSHIP WITH BOTH MAJOR LEAGUE BASEBALL TEAMS IN FLORIDA, AS WELL AS NUMEROUS MINOR LEAGUE TEAMS, FILM FESTIVALS AND THEATRICAL EVENTS SPOTLIGHTING ALS, AND HEALTH FAIRS PROVIDED OPPORTUNITIES TO BRING THE ALS COMMUNITY TOGETHER THROUGHOUT THE STATE. MEDIA RELATIONS AND ONGOING COMMUNICATION WITH VARIOUS MEDIA OUTLETS AROUND THE STATE PROVIDED THE LATEST NEWS AND MANY PATIENT STORIES, SPOTLIGHTING THE NEED FOR MORE FUNDING AND CARE AND SUPPORT OF THE ALS COMMUNITY IN FLORIDA. SOCIAL MEDIA CHANNELS INCLUDING FACEBOOK, TWITTER, AND INSTAGRAM, PROVIDED THE CHAPTER THE CHANCE TO SPREAD AWARENESS OF THE LATEST RESEARCH UPDATES, CHAPTER AND STATEWIDE EVENTS, AND BUILD AN ONLINE COMMUNITY WITH THOSE LIVING WITH ALS AND THOSE SUPPORTING THE ALS COMMUNITY STATEWIDE.
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IRS990/ProgSrvcAccomActy3Grp/Desc0RESEARCH: THE ALS ASSOCIATION FLORIDA CHAPTER, THROUGH THE ALS ASSOCIATION, CONTRIBUTES TO RESEARCH AND PARTICIPATES IN THE GLOBAL NETWORK. THE ALS ASSOCIATION FUNDS OVER 180 ACTIVE RESEARCH PROJECTS IN 11 COUNTRIES IN A DIVERSE RESEARCH PORTFOLIO. FLORIDA PATIENTS AND RESEARCHERS PARTICIPATE IN A VARIETY OF DIFFERENT TYPES OF STUDIES: GENETICS - THE NUMBER OF GENES IDENTIFIED TO CAUSE FAMILIAL ALS HAS MULTIPLIED SINCE THE DISCOVERY OF SOD1. EFFORTS SUCH AS WHOLE GENOME SEQUENCING ARE UNDERWAY WITH THE AIM TO IDENTIFY MORE ALS GENES AND TARGET THEM FOR THERAPY. DRUG DEVELOPMENT - THE DRUG DEVELOPMENT PROCESS TAKES YEARS TO COMPLETE ITS MANY STEPS AND IS COSTLY $1-3 BILLION DOLLARS TO MOVE A BASIC RESEARCH IDEA ALL THE WAY THROUGH CLINICAL TRIALS AND FDA APPROVAL. COLLABORATION IS ESSENTIAL. RESEARCHERS FROM ALL OVER THE WORLD IN ACADEMIA, GOVERNMENT, NON-PROFIT AND INDUSTRY WORK TOGETHER TO MOVE ALONG THE PATHWAY OF DRUG DEVELOPMENT AS RAPIDLY AND EFFICIENTLY AS POSSIBLE. DISEASE MECHANISM - UNDERSTANDING HOW ALS DISEASE WORKS ON MANY BIOLOGICAL LEVELS IS NECESSARY TO IDENTIFY POTENTIAL THERAPEUTIC TARGETS. NANOTECHNOLOGY - STUDIES CONDUCTED AT A VERY SMALL SCALE INCLUDING AT AN ATOMIC AND MOLECULAR LEVEL WILL PROVIDE NEW WAYS TO EVALUATE ALS DISEASE. ANIMAL MODELS - ANIMALS, FROM WORMS TO MICE, THAT MIMIC ALS DISEASE GIVE AN IMPORTANT AVENUE TO EXPLORE BOTH DISEASE MECHANISMS AND TO INVESTIGATE OUTCOME MEASURES OF POTENTIAL THERAPEUTICS FROM A CELLULAR TO A BEHAVIORAL LEVEL BEFORE TESTING IN HUMANS. CLINICAL STUDIES - ESTABLISHING AND ADVANCING STANDARDS IN CARE FOR BOTH PEOPLE LIVING WITH ALS AND THEIR CAREGIVERS IS NECESSARY TO IMPROVE AND ENRICH THEIR LIVES NOW. STUDIES IN THIS CATEGORY INCLUDE TOPICS IN CLINICAL MANAGEMENT GRANTS AND CLINICAL TRIALS. COGNITIVE STUDIES - THERE IS A LARGE BODY OF EVIDENCE DEMONSTRATING THAT COGNITIVE IMPAIRMENT CAN BE INVOLVED IN ALS, INCLUDING EVIDENCE OF OVERLAP WITH OTHER DISORDERS LIKE FRONTOTEMPORAL DEMENTIA (FTD). ASSISTIVE TECHNOLOGY - IMPROVING COMMUNICATION SYSTEMS THROUGH DEVELOPING ACCESSIBLE, PORTABLE DEVICES FOR PEOPLE LIVING WITH ALS IS PARAMOUNT TO MAINTAINING A HIGH QUALITY OF LIFE. BIOMARKERS - A MEASURABLE SUBSTANCE, LIKE CHEMICAL CHANGES IN THE BLOOD OR STRUCTURAL CHANGES IN THE BRAIN, ARE DESPERATELY NEEDED TO IMPROVE DIAGNOSIS, FOLLOW DISEASE PROGRESSION AND TRACK RESPONSE TO THERAPY. ENVIRONMENTAL FACTORS - FEATURES IN A PERSON'S ENVIRONMENT ALONE OR IN COMBINATION WITH GENETIC PREDISPOSITION CAN CONTRIBUTE TO THE DEVELOPMENT OF ALS. PRECISION MEDICINE - EFFECTIVE TREATMENTS WILL TARGET AN INDIVIDUAL PATIENT'S DISEASE PROCESS AND TAKE INTO ACCOUNT INDIVIDUAL VARIABILITY IN GENES, ENVIRONMENT AND LIFESTYLE FOR EACH PERSON. NATURAL HISTORY STUDIES - PROJECTS THAT FOLLOWS PEOPLE LIVING WITH ALS OVER TIME TO TRACK DISEASE WILL HELP IDENTIFY DEMOGRAPHIC, GENETIC AND ENVIRONMENTAL FACTORS THAT CORRELATE WITH DISEASE, ALONG WITH INFORMING DRUG DEVELOPMENT AND PATIENT CARE, AMONG OTHER FACTORS.
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0ADVOCACY: THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTS THE ALS ASSOCIATION'S ADVOCACY AGENDA INCLUDING APPROPRIATIONS, LEGISLATION, AND REGULATORY AFFAIRS. APPROPRIATIONS: PROVIDE $10 MILLION APPROPRIATION TO CONTINUE THE NATIONAL ALS REGISTRY AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION - CONGRESS AND THE ADMINISTRATION MADE ESTABLISHMENT OF THE NATIONAL ALS REGISTRY A TOP PRIORITY THROUGH THE ENACTMENT AND IMPLEMENTATION OF THE ALS REGISTRY ACT IN 2008 (P.L. 110-373). USING A VARIETY OF ENROLLMENT STRATEGIES, INCLUDING ONLINE SELF-ENROLLMENT, THE REGISTRY IDENTIFIES THE NUMBER OF CASES OF ALS IN THE U.S. AND COLLECTS DATA THAT MAY HELP SCIENTISTS LEARN MORE ABOUT WHAT CAUSES THE DISEASE AND HOW IT CAN BE PREVENTED, TREATED, AND, ULTIMATELY, CURED. CONTINUED FUNDING IS NECESSARY TO MOVE THE REGISTRY FORWARD, SUPPORT RELATED ALS RESEARCH, HELP PEOPLE WITH ALS ENROLL IN THE REGISTRY, CONDUCT OUTREACH ACTIVITIES TO IDENTIFY ALS CASES, ESTABLISH AN ALS BIO-REPOSITORY THAT COLLECTS BLOOD AND TISSUE SAMPLES, AND ENABLE THE REGISTRY TO SUPPORT RECRUITMENT FOR CLINICAL TRIALS TO DEVELOP NEW TREATMENTS FOR THE DISEASE. APPROPRIATIONS: PROVIDE $10 MILLION APPROPRIATION TO CONTINUE THE ALS RESEARCH PROGRAM (ALSRP) AT THE DEPARTMENT OF DEFENSE (DOD) - STUDIES SUPPORTED BY THE DOD, DEPARTMENT OF VETERANS AFFAIRS, NATIONAL INSTITUTES OF HEALTH, HARVARD UNIVERSITY AND THE INSTITUTE OF MEDICINE, AMONG OTHERS, REPEATEDLY HAVE FOUND THAT MILITARY VETERANS --REGARDLESS OF BRANCH OR ERA OF SERVICE-- ARE APPROXIMATELY TWICE AS LIKELY TO DIE FROM LOU GEHRIG'S DISEASE AS THOSE WHO HAVE NOT SERVED IN THE MILITARY. TO SUPPORT MILITARY VETERANS IN THE FIGHT AGAINST ALS, CONGRESS AND THE DOD ESTABLISHED THE ALS RESEARCH PROGRAM (ALSRP) IN FY 2007. THE ALSRP FOCUSES ON PEER-REVIEWED TRANSLATIONAL RESEARCH. LEGISLATION: WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY - LEGISLATION HAS BEEN INTRODUCED IN THE HOUSE AND SENATE TO WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI). AFTER A DISABILITY CLAIMANT HAS BEEN APPROVED TO RECEIVE SSDI BENEFITS, THE INDIVIDUAL IS SUBJECT TO A FIVE-MONTH WAITING PERIOD BEFORE THE INDIVIDUAL WILL RECEIVE THE DISABILITY BENEFIT AND ACCESS TO MEDICARE. DURING THIS DEEPLY CHALLENGING TIME, MANY FAMILIES WHO HAVE PAID INTO SOCIAL SECURITY ARE LEFT WITH NO FORM OF INCOME CREATING HARDSHIPS. LEGISLATION: PRESERVE ACCESS TO COMPLEX REHAB TECHNOLOGIES (CRT) - THE ASSOCIATION IS WORKING WITH CONGRESS AND COALITION PARTNERS ON LEGISLATION TO HELP PRESERVE ACCESS TO POWER WHEELCHAIR ACCESSORIES SUCH AS CUSTOM HEAD SUPPORT AND SEATING SYSTEMS, MOUNTING HARDWARE, ADJUSTABLE LEG RESTS, AND SPECIALTY DRIVE CONTROLS AMONG OTHER WHEELCHAIR ACCESSORIES UPON WHICH PEOPLE WITH ALS DEPEND. REGULATORY AFFAIRS: ACCESS TO HOME HEALTH SERVICES - ACCESS TO HOME HEALTH SERVICES IS A FUNDAMENTAL PRIORITY FOR PEOPLE LIVING WITH ALS, THEIR CAREGIVERS AND THE ALS ASSOCIATION. THE ASSOCIATION PLANS TO WORK WITH NEW ADMINISTRATION AND CONGRESSIONAL LEADERS TO ENSURE ACCESS TO HOME HEALTH SERVICES WHICH ENABLE THOSE WITH ALS TO LIVE IN THEIR HOMES AND COMMUNITIES. THIS INCLUDES, BUT IS NOT LIMITED TO, EDUCATING AND ADVOCATING WITH POLICY MAKERS TO ENSURE THAT ANY BARRIERS TO APPROPRIATE ACCESS TO CARE ARE REDUCED OR REMOVED. IT ALSO INCLUDES ADDRESSING PROBLEMS SUCH AS PATIENT AVOIDANCE, DROPPING PATIENTS AND ILLEGALLY LIMITING THE NUMBER OF HOURS SERVICES ARE PROVIDED. ADVOCACY ACTIVITIES:MARCH 2016 - PARTICIPATED IN ""FLY-IN"" ADVOCACY TOP ROOTS EVENT IN WASHINGTON, DC AND VISITED TARGETED FLORIDA REPRESENTATIVES. MAY 2016 - 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.
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IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt028592
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus4YearsAmt021732
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt0150844

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