Civic Intelligence

Amyotrophic Lateral Sclerosis Association

990 • Fiscal year 2020 • EIN 94-3124732

Feb 01, 2019 to Jan 31, 2020 • Filed on Dec 01, 2020

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

70th percentile

0.29x

Higher debt load relative to assets than 70% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Liabilities / Revenue

56th percentile

0.18x

Higher debt load relative to revenue than 56% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Net Margin

20th percentile

-13%

Higher net margin than 20% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Top Officer Pay

66th percentile

$92,516

Higher top officer pay than 66% of similar nonprofits.

Top officer pay equals 4.9% of source-year revenue.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Asset Growth

4th percentile

-25%

Faster asset growth than 4% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Revenue Growth

26th percentile

-17%

Faster revenue growth than 26% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Assets

Down

$1,150,493

Down $377,364 (-25%) from 2019

Net Assets

Down

$813,216

Down $237,798 (-23%) from 2019

Liabilities

Down

$337,277

Down $139,566 (-29%) from 2019

Revenue

Down

$1,883,335

Down $386,124 (-17%) from 2019

Expenses

Down

$2,121,133

Down $374,121 (-15%) from 2019

Net Income

Down

-$237,798

Down $12,003 (-5.3%) from 2019

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

2020

Assets$1,150,493
Liabilities$337,277
Net Assets$813,216

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

2020

Revenue$1,883,335
Expenses$2,121,133
Net Income-$237,798
Jump To
Filing Snapshot
Filing Period
Feb 1, 2019 to Jan 31, 2020
Signed
Dec 1, 2020
Return Version
2019v5.1
Gross Receipts
$1,995,154
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
Land, Buildings, and Equipment, Net$555,727$540,303▼ $15,424
Savings and Temporary Cash Investments$727,647$422,258▼ $305,389
Pledges and Grants Receivable$173,365$96,335▼ $77,030
Cash and Non-Interest-Bearing Accounts$62,102$81,007▲ $18,905
Investments in Publicly Traded Securities$5,150$6,037▲ $887
Prepaid Expenses and Deferred Charges$3,394$4,145▲ $751
Total Assets$1,527,857$1,150,493▼ $377,364
Other Assets Total$472$408▼ $64
Liabilities
Mortgage Notes Payable Secured by Investment Property$200,735$177,491▼ $23,244
Accounts Payable and Accrued Expenses$58,221$73,007▲ $14,786
Other Liabilities$142,226$56,311▼ $85,915
Grants Payable$75,661$30,468▼ $45,193
Total Liabilities$476,843$337,277▼ $139,566
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$987,320$755,525▼ $231,795
Net Assets With Donor Restrictions$63,694$57,691▼ $6,003
Total Net Assets Fund Balance$1,051,014$813,216▼ $237,798
Total Liabilities and Net Assets / Fund Balance$1,527,857$1,150,493▼ $377,364

Asset Categories

AssetBook ValueDepreciationBasis
Buildings$314,711$170,898$485,609
Equipment$592$425,746$426,338
Land$225,000-$225,000
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Ray CarsonPresident/CEO (4/8/19-1/31/20)FT$92,516-$92,516
Gabby HarrisonDirector of Operations (2/1/19-7/18/19)FT$59,880$798$60,678

Board Members and Trustees

NameTitle
John CannistraChairman
Alecia Jones BaileyTrustee
Jo-ann ClynchTrustee
John CollinsTrustee
Kevin ConnTrustee
Tim CummingsTrustee
Wendy Bitner RodinTrustee (2/1/19-08/28/19)
Melissa SpringTrustee (3/14/19-1/31/20)
Troy FieldsTrustee (3/14/19-1/31/20)
Sharon MaybrookSecretary
Glenn StambaughTreasurer
Hampton GrahamVice Chariman
Revenue and Support

Revenue Composition

Contributions and Grants
$1,962,348
Program Service Revenue
$0
Investment Income
$1,419
Other Revenue
$-80,432
All Other Contributions
$530,310
Change in Net Assets
$-237,798

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
Other Non Cash Contri Table69$67,400Fair Market Value
Securities Publicly Traded1$436Stock Quote
Total Noncash Contributions70$67,836-

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,883,335
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$110,081
Total Revenue per Audited Statements
$1,993,416
Total Revenue per Form 990
$1,883,335
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,141,838
Other Expenses$668,431
Grants and Similar Amounts Paid$310,864
Total Fundraising Expense$283,221
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$610,166$21,286$189,841$821,293
Grants to Domestic Orgs$251,337--$251,337
Office Expenses$222,013$7,117$12,698$241,828
Fees for Services Other$210,457$3,897$5,187$219,541
Current Officers, Directors, Trustees, and Key Employees$127,929$16,740$22,728$167,397
Payroll Taxes$61,424$3,165$17,690$82,279
Other Employee Benefits$52,906$2,726$15,237$70,869
Grants to Domestic Individuals$59,527--$59,527
Fees for Services Accounting$10,058$40,233-$50,291
Travel$43,518$507$3,126$47,151
Information Technology$35,328$4,416$4,416$44,160
Conferences and Meetings$17,267$1,170$8,901$27,338
Occupancy$16,629$2,079$2,079$20,787
Depreciation Depletion$6,153$535$743$7,431
Insurance$4,124$515$515$5,154
Fees for Services Legal$627$2,508-$3,135
All Other Expenses$479$391$60$930
Other Expenses-$685-$685
Total Functional Expenses$871$0$4,357$5,228

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,231,214
Expenses per Audited Statements$2,121,133
Total Expenses per Form 990$2,121,133
Expenses Not Reported on Form 990$110,081
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.$212,306
The Als AssociationWashington, DC501(c)(3)Research$39,031
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$93,280
Fundraising Gross Income$5,500
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk to Defeat Als Events$1,129,472-$42,831-
Ride to Defeat Als Events$145,567$5,500$6,515$-1,015
Total Events$1,275,039$5,500$93,280$-87,780
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$56,311
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
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 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
2020-12-01
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Ray Carson
Formed
1987
Legal Domicile
Fl
Voting Board Members
11
Independent Board Members
11
Employees
28
Volunteers
700

Preparer

Firm
Cbiz Mhm LLC
Address
13577 FEATHER SOUND DR SUITE 400, CLEARWATER, FL 33762-5539
Preparer
Paul Dunham
Phone
7275721400
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

Clinical services: program service expenses 149,598. Management and general expenses 0. Fundraising expenses 0. Total expenses 149,598. Payroll administration: program service expenses 17,891. Management and general expenses 922. Fundraising expenses 5,152. Total expenses 23,965. Other professional fees: program service expenses 42,968. Management and general expenses 2,975. Fundraising expenses 35. Total expenses 45,978.

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 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, 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, 2017 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, 2020 and 2019, 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 93,280. Rental expenses deducted on part viii, line 6b 17,132. Reclass of negative revenue on part ix, line 24e -331.

PART XII, LINE 2D - OTHER ADJUSTMENTS:

Event expenses deducted on part viii, line 8b 93,280. Rental expenses deducted on part viii, line 6b 17,132. Reclass of negative revenue on part ix, line 24e -331.

Raw XML AppendixShowing 400 of 678 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 1,412 PATIENTS IN 2019. PROGRAMS INCLUDED: 1) SPONSORSHIP OF EIGHT ALS MULTIDISCIPLINARY CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDED BOTH FINANCIAL SUPPORT AND IN-KIND STAFFING SUPPORT; 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 19 STATEWIDE LOCATIONS ATTENDED BY 1,742 PEOPLE OVER THE YEAR;(CONTINUED ON SCHEDULE O)4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 383 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 40 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 107 MONETARY GRANTS TO PATIENTS THAT PROVIDED 598 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 AWARDS LUNCHEON ATTENDED BY 308 CONSTITUENTS; AND 10) SUPPORTED CAMP HLC, A THREE-DAY RETREAT FOR CHILDREN AND YOUNG ADULTS WHO HAVE OR HAD A LOVED ONE DIAGNOSED WITH ALS, WITH A FINANCIAL SPONSORSHIP.
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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 2019 - PARTICIPATED IN "FLY-IN" ADVOCACY TOP ROOTS EVENT IN WASHINGTON, DC AND VISITED TARGETED FLORIDA REPRESENTATIVES.MAY 2019 - ANNUAL NATIONAL ALS ADVOCACY DAYS AND PUBLIC POLICY CONFERENCE IN WASHINGTON, DC. ADVOCATES MET WITH FLORIDA'S TWO SENATORS AND 27 REPRESENTATIVES IN THEIR WASHINGTON OFFICES.AUGUST 2019 - MET WITH SENATORS AND REPRESENTATIVES IN FLORIDA DISTRICT OFFICES DURING CONGRESSIONAL RECESS. 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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