Civic Intelligence

Amyotrophic Lateral Sclerosis Association

990 • Fiscal year 2021 • EIN 94-3124732

Feb 01, 2020 to Jan 31, 2021 • Filed on Dec 13, 2021

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

82nd percentile

0.45x

Higher debt load relative to assets than 82% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Liabilities / Revenue

73rd percentile

0.32x

Higher debt load relative to revenue than 73% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Net Margin

41st percentile

7.7%

Higher net margin than 41% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Top Officer Pay

81st percentile

$133,900

Higher top officer pay than 81% of similar nonprofits.

Top officer pay equals 5.0% of source-year revenue.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Asset Growth

89th percentile

62%

Faster asset growth than 89% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2020 to 2021

Revenue Growth

72nd percentile

41%

Faster revenue growth than 72% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2020 to 2021

Assets

Up

$1,859,209

Up $708,716 (+62%) from 2020

Net Assets

Up

$1,014,022

Up $200,806 (+25%) from 2020

Liabilities

Up

$845,187

Up $507,910 (+151%) from 2020

Revenue

Up

$2,660,252

Up $776,917 (+41%) from 2020

Expenses

Up

$2,454,446

Up $333,313 (+16%) from 2020

Net Income

Up

$205,806

Up $443,604 (+187%) from 2020

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

2021

Assets$1,859,209
Liabilities$845,187
Net Assets$1,014,022

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

2021

Revenue$2,660,252
Expenses$2,454,446
Net Income$205,806
Jump To
Filing Snapshot
Filing Period
Feb 1, 2020 to Jan 31, 2021
Signed
Dec 13, 2021
Return Version
2020v4.1
Gross Receipts
$2,836,771
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 programs funds & participating in advocacy.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$422,258$579,198▲ $156,940
Land, Buildings, and Equipment, Net$540,303$526,442▼ $13,861
Pledges and Grants Receivable$96,335$395,609▲ $299,274
Cash and Non-Interest-Bearing Accounts$81,007$344,353▲ $263,346
Prepaid Expenses and Deferred Charges$4,145$13,262▲ $9,117
Investments in Publicly Traded Securities$6,037$0▼ $6,037
Total Assets$1,150,493$1,859,209▲ $708,716
Other Assets Total$408$345▼ $63
Liabilities
Grants Payable$30,468$232,777▲ $202,309
Unsecured Notes Loans Payable-$190,600-
Other Liabilities$56,311$183,014▲ $126,703
Mortgage Notes Payable Secured by Investment Property$177,491$161,496▼ $15,995
Accounts Payable and Accrued Expenses$73,007$77,300▲ $4,293
Total Liabilities$337,277$845,187▲ $507,910
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$755,525$931,329▲ $175,804
Net Assets With Donor Restrictions$57,691$82,693▲ $25,002
Total Net Assets Fund Balance$813,216$1,014,022▲ $200,806
Total Liabilities and Net Assets / Fund Balance$1,150,493$1,859,209▲ $708,716

Asset Categories

AssetBook ValueDepreciationBasis
Buildings$301,442$184,167$485,609
Equipment$0$426,338$426,338
Land$225,000-$225,000
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Ray CarsonPresident/CEOFT$130,000$3,900$133,900

Board Members and Trustees

Highest Paid Contractors

ContractorServicesLocationCompensation
Mayo Clinic JacksonvilleCenter Support4500 SAN PABLO RD, Jacksonville, FL 32224$147,802
University Of MiamiCenter Support1150 NW 14TH ST STE 609, Miami, FL 33136$139,848
Usf Foundation INCCenter Support4202 E FOWLER AVE ALC 100, Tampa, FL 33620$123,395
Revenue and Support

Revenue Composition

Contributions and Grants
$2,711,833
Program Service Revenue
$0
Investment Income
$2,447
Other Revenue
$-54,028
All Other Contributions
$1,393,503
Change in Net Assets
$205,806

Noncash Contribution Practices

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

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded17$104,895Stock Quote
Other Non Cash Contri Table103$96,600Fair Market Value
Total Noncash Contributions120$201,495-

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,660,252
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$69,986
Total Revenue per Audited Statements
$2,730,238
Total Revenue per Form 990
$2,660,252
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,219,290
Other Expenses$922,772
Total Fundraising Expense$321,972
Grants and Similar Amounts Paid$312,384
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$668,438$13,167$235,059$916,664
Fees for Services Other$528,383$540$5,124$534,047
Grants to Domestic Orgs$251,853--$251,853
Current Officers, Directors, Trustees, and Key Employees$107,120$13,390$13,390$133,900
Payroll Taxes$59,313$2,009$19,048$80,370
Other Employee Benefits$54,433$1,844$17,481$73,758
Office Expenses$54,180$7,468$6,770$68,418
Information Technology$52,554$6,569$6,569$65,692
Fees for Services Accounting$11,633$42,142$6,835$60,610
Grants to Domestic Individuals$60,531--$60,531
Fees for Services Lobbying$37,270--$37,270
Occupancy$24,818$3,102$3,103$31,023
Pension Plan Contributions$10,532$72$3,994$14,598
Conferences and Meetings$6,460$441$3,310$10,211
Depreciation Depletion$8,319$722$1,005$10,046
Travel-$5,731-$5,731
Insurance$2,107$263$263$2,633
Other Expenses$96,600$215-$215
All Other Expenses$169$21$21$211
Fees for Services Legal$65--$65
Total Functional Expenses$982$0$13,391$14,373

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,529,432
Expenses per Audited Statements$2,454,446
Total Expenses per Form 990$2,454,446
Expenses Not Reported on Form 990$74,986
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
The Als AssociationWashington, DC501(c)(3)Advocacy, Awareness, Care Services, Etc.$241,269
The Als AssociationWashington, DC501(c)(3)Research$10,584
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$57,800
Fundraising Gross Income$1,435
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk to Defeat Als Events$659,425-$36,952-
Ride to Defeat Als Events$114,268$1,435$4,200$-2,765
Total Events$811,431$1,435$57,800$-56,365
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$183,014
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 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
Yes
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 A, Line 2

Trustees hampton graham and glenn stambaugh have a professional business relationship outside of their duties as board members.

Form 990, Part VI, Section A, Line 4

The bylaws were amended during the year. The first change created a new class of board member known as honorary life member. The new class was recommended so that the chapter board could have the option of retaining the institutional knowledge of valued board members after they have completed their three, 3-year terms. Approved honorary life members would be invited to all board meetings but would not have the ability to vote so they would not be counted toward a meeting quorum. The second bylaw change automatically extended the term of an outgoing chairman by two years, even if that means that the individual would exceed his/her three, 3-year terms to ensure that an incoming chairman would have the benefit and support of having the immediate past chairman on the board.

Form 990, Part VI, Section B, Line 11B

The audit report and form 990 is first reviewed and discussed with the finance committee and the accountant. Once any questions or concerns have been addressed, the finance committee votes to accept the audit report and form 990. Once this is complete, both are presented to the entire board of directors for vote and approval.

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

Board members and key employees are asked to sign a conflict of interest policy annually. Any conflicts are discussed with the executive committee of the board for appropriate action, if necessary. 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 president/ceo's salary is as follows: (1) the president/ceo's performance is reviewed by the chairman and a written evaluation is provided to the president/ceo 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 president/ceo; 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
Ray Carson
Title
President/CEO
Phone
8136379000
Signed
2021-12-13
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Ray Carson
Formed
1987
Legal Domicile
Fl
Voting Board Members
12
Independent Board Members
12
Employees
20
Volunteers
325

Preparer

Firm
Cbiz Mhm LLC
Address
140 FOUNTAIN PKWY N STE 410, ST PETERSBURG, FL 33716
Preparer
Paul Dunham
Phone
7275721400
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

Payroll administration: program service expenses 15,955. Management and general expenses 540. Fundraising expenses 5,124. Total expenses 21,619. Other professional fees: program service expenses 52,319. Management and general expenses 0. Fundraising expenses 0. Total expenses 52,319. Contractor fees: program service expenses 18,900. Management and general expenses 0. Fundraising expenses 0. Total expenses 18,900. Subcontractor fees-center support: program service expenses 441,209. Management and general expenses 0. Fundraising expenses 0. Total expenses 441,209.

FORM 990, PART XI, LINE 9:

Write off of uncollectable pledges -5,000.

FORM 990, PART XII, LINE 2C:

The financial statement audit and selection of the independent cpa firm is managed by the president/ceo and overseen by the finance committee of the board. The cpa firm presents the audit and 990 to the finance committee. The firm meets with the treasurer at least once without staff present to ensure the process is fully independent. The finance committee 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. This process has not changed from the prior year.

Financial Statement Notes

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 tax-exempt organizations 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, income taxes, 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, 2018 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, 2021 and 2020, this activity generated a nominal amount of income tax expense in each year.

PART XI, LINE 2D - OTHER ADJUSTMENTS:

Event expenses deducted on part viii, line 8b 57,800. Rental expenses deducted on part viii, line 6b 12,186.

PART XII, LINE 2D - OTHER ADJUSTMENTS:

Event expenses deducted on part viii, line 8b 57,800. Rental expenses deducted on part viii, line 6b 12,186. Write off of uncollectable pledges reported on part xi, line 9 5,000.

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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 1,477 PATIENTS IN 2020. PROGRAMS INCLUDED: 1) PARTNERSHIP WITH 10 MULTIDISCIPLINARY ALS CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDE IN-KIND STAFF SUPPORT, PROVIDING 1,548 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) SUPPORT/RESOURCE GROUPS IN 21 STATEWIDE LOCATIONS, 148 MEETINGS HELD, ATTENDED BY 1,231 PEOPLE OVER THE YEAR; (CONTINUED ON SCHEDULE O)4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 275 PIECES OF DURABLE MEDICAL EQUIPMENT AND ASSISTIVE AUGMENTED COMMUNICATION DEVICES TO PATIENTS IN NEED; 5) ALS SPECIALTY HOME HEALTH COORDINATION; 6) A VISITING VOLUNTEERS PROGRAM THAT MATCHED 19 PEOPLE LIVING WITH ALS WITH A VOLUNTEER TO ASSIST IN THE HOME WITH NON-MEDICAL NEEDS SUCH AS YARD WORK, HOME CLEANING, AND OTHER HOME PROJECTS; 7) FUNDING FOR 111 MONETARY GRANTS TO PATIENTS THAT PROVIDED 479 HOURS OF RESPITE CARE, AS WELL AS HOME MODIFICATIONS, VAN MODIFICATIONS, TRANSPORTATION, MEDICAL EQUIPMENT NOT COVERED BY INSURANCE, AND OTHER FINANCIAL NEEDS; 8) THE RICK AND SHERRY MURRAY MEDICAL FUTURES SCHOLARSHIP FUND, PROVIDING SCHOLARSHIPS TO 1 STUDENT; 9) 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. IN 2020, BECAUSE OF COVID-19 THIS EVENT WAS HELD VIRTUALLY AND ATTENDED BY 252 CONSTITUENTS.
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IRS990/MissionDesc0OUR 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.
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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 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. (CONTINUED ON SCHEDULE O)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 VARIOUS SPONSORS AND PARTICIPATION IN 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, HAS COMMITTED OVER $2 MILLION TO 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.
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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.FEDERAL PUBLIC POLICY PRIORITIESAPPROPRIATIONS FOR ALS RESEARCH:NATIONAL ALS REGISTRY - PROVIDE $10 MILLION APPROPRIATION TO CONTINUE THE NATIONAL ALS REGISTRY AND BIOREPOSITORY AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION. THE REGISTRY COLLECTS DATA AND DIRECTS A BIOREPOSITORY FOR PEOPLE LIVING WITH ALS AND COLLABORATES WITH THE CENTERS FOR MEDICARE AND MEDICAID SERVICES, THE VETERAN'S ADMINISTRATION AND THE NATIONAL INSTITUTES OF HEALTH (NIH). IT IS A CRITICAL DRIVER OF THE SEARCH TO FIND TREATMENTS AND A CURE BECAUSE IT CONNECTS RESEARCHERS CONDUCTING CLINICAL TRIALS WITH PEOPLE LIVING WITH ALS IN ADDITION TO FUNDING ITS OWN RESEARCH.DEPARTMENT OF DEFENSE - PROVIDE A $10 MILLION APPROPRIATION TO CONTINUE THE ALS RESEARCH PROGRAM (ALSRP) AT THE DEPARTMENT OF DEFENSE (DOD). RESEARCH HAS REPEATEDLY DEMONSTRATED THAT MILITARY VETERANS, REGARDLESS OF BRANCH OR ERA OF SERVICE, ARE APPROXIMATELY TWICE AS LIKELY TO DIE FROM ALS THAN CIVILIANS. THE ALS RESEARCH PROGRAM (ALSRP), FUNDED AS PART OF THE CONGRESSIONAL DIRECTED MEDICAL RESEARCH PROGRAM AT DOD, PROVIDES COMPETITIVE GRANTS THAT ARE AN ESSENTIAL COMPONENT OF EFFORTS TO IDENTIFY TREATMENTS AND A CURE FOR ALS.NATIONAL INSTITUTES OF HEALTH - CONTINUE ALS RESEARCH AT THE NATIONAL INSTITUTE FOR NEUROLOGICAL DISORDERS AND STROKE AND OTHER INSTITUTES AT THE NATIONAL INSTITUTES OF HEALTH (NIH). NIH SPENDS APPROXIMATELY $55 MILLION FOR ALS RESEARCH WITHIN THE NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE (NINDS) AND FOUR OTHER INSTITUTES.LEGISLATION:WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY - THE ALS DISABILITY INSURANCE ACCESS ACT (S.379/ H.R.1171) TO ELIMINATE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI) OR MEDICARE DID NOT PASS IN THE 115TH CONGRESS. UNDER CURRENT LAW, PEOPLE WITH ALS WHO QUALIFY FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI) MUST WAIT FIVE MONTHS BEFORE RECEIVING SSDI AND ACCESS TO MEDICARE. THE LEGISLATION WOULD ELIMINATE THE FIVE-MONTH WAITING PERIOD FOR PEOPLE WITH ALS. THE BILL WILL BE RE-INTRODUCED IN THE 116TH CONGRESS.REGULATORY AFFAIRS:MEDICARE PROPOSED RULE - THE ALS ASSOCIATION SUBMITTED COMMENTS ON THE CENTERS FOR MEDICARE AND MEDICAID (CMS) PROPOSED RULE 1689-P. THE LETTER FOCUSED ON TWO COMPONENTS OF THE PROPOSED RULE: HOME HEALTH AND HOME INFUSIONS.CHAPTER ADVOCACY ACTIVITIES:MARCH 2020 - PARTICIPATED IN "FLY-IN" ADVOCACY TOP ROOTS (IN WASHINGTON, DC) EVENT VIRTUALLY THIS YEAR BECAUSE OF COVID-19. MET WITH TARGETED FLORIDA REPRESENTATIVES OVER ZOOM VIDEO CALLS.MAY 2020 - ANNUAL NATIONAL ALS ADVOCACY DAYS AND PUBLIC POLICY CONFERENCE TYPICALLY ATTENDED IN WASHINGTON, DC WAS ATTENDED VIRTUALLY OVER ZOOM VIDEO CALLS. CHAPTER ADVOCATES MET WITH FLORIDA'S TWO SENATORS AND 27 REPRESENTATIVES VIRTUALLY.OTHER ADVOCACY ACTIVITIES:BOARD OF DIRECTORS COMMITTEE ON ADVOCACY FOCUSED ON ENGAGING BOARD MEMBERS IN FEDERAL ADVOCACY AND DISCUSSED OPTIONS FOR BUILDING A STATE ADVOCACY PROGRAM.
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