Civic Intelligence

Unknown Organization

990 • Fiscal year 2014 • EIN 41-1712790

Jul 01, 2013 to Jun 30, 2014 • Filed on Mar 03, 2015

3300 Ponce DE Leon Boulevard33134

(305) 567-9888

Siviq Scores

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

Liabilities / Assets

68th percentile

0.31x

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

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Liabilities / Revenue

57th percentile

0.16x

Higher debt load relative to revenue than 57% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Net Margin

13th percentile

-20%

Higher net margin than 13% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Top Officer Pay

Score unavailable

No value available

This filing does not contain officer compensation rows.

Source year 2014

Asset Growth

7th percentile

-16%

Faster asset growth than 7% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2013 to 2014

Revenue Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2014

Assets

Down

$776,040

Down $152,304 (-16%) from 2013

Net Assets

Down

$539,033

Down $293,256 (-35%) from 2013

Liabilities

Up

$237,007

Up $140,952 (+147%) from 2013

Revenue

Down

$1,464,840

Down $20,088 (-1.4%) from 2013

Expenses

Up

$1,758,096

Up $159,988 (+10%) from 2013

Net Income

Down

-$293,256

Down $180,076 (-159%) from 2013

Historical Trend

Balance Sheet Trend

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

$1.5M$1.0M$500K$0Assets 2011: $1,126,690Liabilities 2011: $30,348Net Assets 2011: $1,096,3422011Assets 2012: $1,148,483Liabilities 2012: $203,014Net Assets 2012: $945,4692012Assets 2013: $928,344Liabilities 2013: $96,055Net Assets 2013: $832,2892013Assets 2014: $776,040Liabilities 2014: $237,007Net Assets 2014: $539,0332014

Highlighted filing

2014

Assets$776,040
Liabilities$237,007
Net Assets$539,033

Operations Trend

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

$2.0M$1.0M$0-$1.0MExpenses 2011: $1,275,2802011Expenses 2012: $1,511,1512012Revenue 2013: $1,484,928Expenses 2013: $1,598,108Net Income 2013: -$113,1802013Revenue 2014: $1,464,840Expenses 2014: $1,758,096Net Income 2014: -$293,2562014

Highlighted filing

2014

Revenue$1,464,840
Expenses$1,758,096
Net Income-$293,256
Jump To
Filing Snapshot
Filing Period
Jul 1, 2013 to Jun 30, 2014
Signed
Mar 3, 2015
Return Version
2013v4.0
Gross Receipts
$1,486,334
Mission and Program Overview

Mission

The mission of the alpha-1 association is to identify those affected with alpha-1 antitrypsin deficiency and to improve the quality of their lives through support, education, and advocacy and encourage participation in research. The mission is accomplished with the assistance of more than 745 volunteers in fiscal year 2014 from the alpha-1 community. Programs and services have been provided to more than 5,000 alpha's and family members and the association has reached more than 10,000 alpha's, family members, healthcare professionals and others through its publications and communication efforts.

The alpha-1 association is the leading national patient membership organization which has served the alpha-1 patient community since 1991. It's programs include a national support network which encompasses more than 80 support groups, 4 virtual support groups, a patient hotline, annual national education conference, regional education day programs, genetic counseling service, an advocacy/public policy program and a resource website (www.alpha1.org)

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$503,253$499,512▼ $3,741
Pledges and Grants Receivable$348,500$211,600▼ $136,900
Accounts Receivable$4,148$41,749▲ $37,601
Prepaid Expenses and Deferred Charges$16,693$0▼ $16,693
Cash and Non-Interest-Bearing Accounts$23,491$15,341▼ $8,150
Land, Buildings, and Equipment, Net$32,259$7,838▼ $24,421
Total Assets$928,344$776,040▼ $152,304
Liabilities
Accounts Payable and Accrued Expenses$81,055$229,507▲ $148,452
Deferred Revenue$15,000$7,500▼ $7,500
Total Liabilities$96,055$237,007▲ $140,952
Net Assets / Fund Balance
Temporarily Rstr Net Assets$443,056$415,912▼ $27,144
Unrestricted Net Assets$389,233$123,121▼ $266,112
Total Net Assets Fund Balance$832,289$539,033▼ $293,256
Total Liabilities and Net Assets / Fund Balance$928,344$776,040▼ $152,304

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$7,838$14,549$22,387
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Marlene S ErvenExecutive DirectorFT$106,155$106,155

Board Members and Trustees

NameTitle
Henry MoehringChair
Kenneth BensonPast Chair
Jen ChildressVice Chair
Dc YoungDirector
Jennifer JoppDirector
Karen VossDirector
Thomas CorronDirector
Virginia ClarkDirector
Dell WitcherSecretary
Sandra DouglasTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,314,389
Program Service Revenue
$165,631
Investment Income
$-15,180
Other Revenue
$0
All Other Contributions
$1,301,734
Change in Net Assets
$-293,256

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,464,840
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$15,904
Total Revenue per Audited Statements
$1,480,744
Total Revenue per Form 990
$1,464,840
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,072,947
Salaries, Compensation, and Employee Benefits$619,715
Total Fundraising Expense$72,850
Grants and Similar Amounts Paid$65,434
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$267,838$22,815$18,104$308,757
Conferences and Meetings$265,666$24,271$324$290,261
Travel$206,430$33,707$1,899$242,036
Current Officers, Directors, Trustees, and Key Employees$163,590$13,963$11,132$188,685
Office Expenses$124,492$31,778$6,557$162,827
Fees for Services Other$213,663$-57,834$5,908$161,737
Occupancy$71,681$6,111$4,858$82,650
Other Employee Benefits$63,738$5,434$4,319$73,491
Grants to Domestic Individuals$65,434--$65,434
Fees for Services Accounting-$53,425-$53,425
Payroll Taxes$34,373$2,930$2,329$39,632
All Other Expenses$14,593$3,395$15,588$33,576
Fees for Services Legal-$27,754-$27,754
Pension Plan Contributions$7,936$676$538$9,150
Insurance$7,850$442$351$8,643
Depreciation Depletion$6,812$723$443$7,978
Other Expenses-$1,560$500$2,060
Total Functional Expenses$1,514,096$171,150$72,850$1,758,096

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$1,758,096
Total Expenses per Audited Statements$1,758,096
Total Expenses per Form 990$1,758,096
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
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
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
Yes
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 1

The executive committee exercises the board's powers as necessary between board meetings (excepting matters of critical importance, as defined by board resolution or powers specifically reserved to the board or membership by law, these bylaws, or resolution approved by a majority of the board's total membership). The board, in its discretion, may add directors or officers to the executive committee from time to time who shall serve until removed or replaced.

Form 990, Part VI, Section A, Line 4

The alpha-1 association board voted to merge into the alpha-1 foundation, another 501(c)(3) organization, as of july 1, 2014.

Form 990, Part VI, Section A, Line 6

Alpha-1 is a membership organization.

Form 990, Part VI, Section A, Line 7A

The nominating and governance committee presents to the members a proposed slate of qualified candidates to be elected by the general membership at the annual meeting. Directors are elected 50% by election of the membership and 50% as appointed by the board. Prior to the expiration of any term of corporate officers the nominating and governance committee presents to the board a slate of officers to fill the positions of chair, vice-chair, secretary, treasurer and chair of the nominating & governance committee.

Form 990, Part VI, Section A, Line 7B

Members approved the merger into the alpha-1 foundation.

Form 990, Part VI, Section B, Line 11

All members of the finance committee are provided a draft of the audited financial report and a draft of the irs form 990 prior to a telephone conference where the members have management and the auditors review the audited financial statements and the form 990. The tax return is explained in detail to assure that they are fully aware of the contents of the return.

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

This association's board of directors and employees are required to acknowledge annually that he or she has read the conflict of interest statement and is in compliance with this policy. When a covered person becomes aware of a proposed covered transaction, he or she has a duty to immediately disclose the existence and circumstances of such covered transaction to the association's board in writing, refrain from using his or her personal influence to encourage the association to enter into the covered transaction and physically excuse himself or herself from any discussions regarding the covered transaction except to answer questions, including board discussions and decisions on the subject.

Form 990, Part VI, Section B, Line 15

Similar positions in the florida area are researched by the human resource coordinator, through guidestar an online program that researches other non-profits and the alpha-1 foundation which has positions similar to the association's.

Form 990, Part VI, Section C, Line 19

Public documents will be made available upon request.

Filing and Contact Details

Filer

EIN
41-1712790
Phone
3055679888

Signing Officer

Name
Robert C Barrett
Title
VP, CFO
Phone
3055679888
Signed
2015-03-03
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Robert C Barrett
Formed
1991
Legal Domicile
Mn
Voting Board Members
10
Independent Board Members
10
Employees
9
Volunteers
750

Preparer

Preparer
Ashley C Rehn CPA
Phone
6514267000
Supplemental Narrative

Additional Explanations

Form 990, Part III, Line 3

The alpha-1 association board voted to merge into the alpha-1 foundation, another 501(c)(3) organization, as of july 1, 2014.

Financial Statement Notes

PART X, LINE 2:

A tax expense or benefit from an uncertain income tax position (including tax exempt status) may be recognized only when it is more likely than not that the position will be sustained upon examination by taxing authorities. Management believes the association has no uncertain income tax positions that would result in an accrual, expense or benefit in a material amount under the more likely than not standard.

PART XI, LINE 2D - OTHER ADJUSTMENTS:

Loss on disposal of assets 15,904.

Raw XML AppendixShowing 400 of 554 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/ActivityOrMissionDesc0THE ALPHA-1 ASSOCIATION IS THE LEADING NATIONAL PATIENT MEMBERSHIP ORGANIZATION WHICH HAS SERVED THE ALPHA-1 PATIENT COMMUNITY SINCE 1991. IT'S PROGRAMS INCLUDE A NATIONAL SUPPORT NETWORK WHICH ENCOMPASSES MORE THAN 80 SUPPORT GROUPS, 4 VIRTUAL SUPPORT GROUPS, A PATIENT HOTLINE, ANNUAL NATIONAL EDUCATION CONFERENCE, REGIONAL EDUCATION DAY PROGRAMS, GENETIC COUNSELING SERVICE, AN ADVOCACY/PUBLIC POLICY PROGRAM AND A RESOURCE WEBSITE (WWW.ALPHA1.ORG)
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IRS990/Desc0THE ALPHA-1 ASSOCIATION'S 21ST ANNUAL NATIONAL EDUCATIONAL CONFERENCE, WAS HELD ON JUNE 6-8, 2014 IN KANSAS CITY, MO, WITH A TOTAL OF 511 ATTENDEES. THE SPEAKERS INCLUDED SOME OF THE LEADING CLINICIANS AND RESEARCHERS IN THE FIELD OF ALPHA-1 AS WELL AS OTHER HEALTH PROFESSIONALS. THE PROGRAM COVERED A WIDE RANGE OF MEDICAL EDUCATION TOPICS AND SUPPORTIVE TOPICS TO INFORM AND EMPOWER PATIENTS ABOUT THEIR HEALTH. THE CONFERENCE ALLOWED PATIENTS TO NETWORK WITH OTHER PATIENTS, BECOME MOTIVATED TO TAKE CHARGE OF THEIR HEALTH, PARTICIPATE IN LOCAL SUPPORT GROUPS, AWARENESS, OUTREACH, OR ADVOCACY PROGRAMS. THE LAST FIVE YEARS OF PRESENTATIONS ARE AVAILABLE ON THE ASSOCIATION WEBSITE AT WWW.ALPHA1.ORG.
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IRS990/MissionDesc0THE MISSION OF THE ALPHA-1 ASSOCIATION IS TO IDENTIFY THOSE AFFECTED WITH ALPHA-1 ANTITRYPSIN DEFICIENCY AND TO IMPROVE THE QUALITY OF THEIR LIVES THROUGH SUPPORT, EDUCATION, AND ADVOCACY AND ENCOURAGE PARTICIPATION IN RESEARCH. THE MISSION IS ACCOMPLISHED WITH THE ASSISTANCE OF MORE THAN 745 VOLUNTEERS IN FISCAL YEAR 2014 FROM THE ALPHA-1 COMMUNITY. PROGRAMS AND SERVICES HAVE BEEN PROVIDED TO MORE THAN 5,000 ALPHA'S AND FAMILY MEMBERS AND THE ASSOCIATION HAS REACHED MORE THAN 10,000 ALPHA'S, FAMILY MEMBERS, HEALTHCARE PROFESSIONALS AND OTHERS THROUGH ITS PUBLICATIONS AND COMMUNICATION EFFORTS.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd00
IRS990/NetAssetsOrFundBalancesBOYAmt0832289
IRS990/NetAssetsOrFundBalancesEOYAmt0539033
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt0-15904
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0-15904
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt04858
IRS990/OccupancyGrp/ManagementAndGeneralAmt06111
IRS990/OccupancyGrp/ProgramServicesAmt071681
IRS990/OccupancyGrp/TotalAmt082650
IRS990/OfficeExpensesGrp/FundraisingAmt06557
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt031778
IRS990/OfficeExpensesGrp/ProgramServicesAmt0124492
IRS990/OfficeExpensesGrp/TotalAmt0162827
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt04319
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt05434
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt063738
IRS990/OtherEmployeeBenefitsGrp/TotalAmt073491
IRS990/OtherExpensesGrp/Desc0DUES AND SUBSCRIPTIONS
IRS990/OtherExpensesGrp/FundraisingAmt0500
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt01560
IRS990/OtherExpensesGrp/TotalAmt02060
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt018104
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt022815
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0267838
IRS990/OtherSalariesAndWagesGrp/TotalAmt0308757
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt02329
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt02930
IRS990/PayrollTaxesGrp/ProgramServicesAmt034373
IRS990/PayrollTaxesGrp/TotalAmt039632
IRS990/PensionPlanContributionsGrp/FundraisingAmt0538
IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt0676
IRS990/PensionPlanContributionsGrp/ProgramServicesAmt07936
IRS990/PensionPlanContributionsGrp/TotalAmt09150
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0348500
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0211600
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt016693
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt00
IRS990/PrincipalOfficerNm0ROBERT C BARRETT
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0541900
IRS990/ProgramServiceRevenueGrp/BusinessCd1511190
IRS990/ProgramServiceRevenueGrp/Desc0CONFERENCE REVENUES
IRS990/ProgramServiceRevenueGrp/Desc1NEWSLETTER ADVERTISING
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt098131
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt098131
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt167500
IRS990/ProgramServiceRevenueGrp/UnrelatedBusinessRevenueAmt067500
IRS990/ProgSrvcAccomActy2Grp/Desc0PATIENT SUPPORT NETWORK - THE ALPHA-1 SUPPORT GROUP NETWORK ENCOMPASSES 80 SUPPORT GROUPS, FOUR VIRTUAL SUPPORT GROUPS, A PATIENT HOT LINE AND PEER GUIDE REFERRAL PROGRAM. SUPPORT GROUPS ARE COMMITTED TO IMPROVING THE QUALITY OF LIFE INDIVIDUALS AND THEIR FAMILIES AFFECTED BY ALPHA-1. THE FOUR VIRTUAL SUPPORT GROUPS INCLUDE THE ALPHA-1 FAMILIES, TRANSPLANT, CAREGIVERS, AND ALPHA-1 TIMELY TOPICS. IN ADDITION, MONTHLY TELECALLS ARE HELD FOR SUPPORT GROUP LEADERS TO PROVIDE ONGOING COMMUNICATION AND EDUCATION.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0242873
IRS990/ProgSrvcAccomActy2Grp/GrantAmt019299
IRS990/ProgSrvcAccomActy3Grp/Desc0NATIONAL EDUCATION SERIES - THIS SERIES OF SEVEN (7) ONE-DAY REGIONAL PATIENT EDUCATIONAL PROGRAMS THAT HAS BEEN CONDUCTED SINCE 1999. THE SERIES PROVIDES ACCESS TO CURRENT MEDICAL INFORMATION AND RESOURCES TO HUNDREDS OF ALPHAS, THEIR FAMILIES, AND CAREGIVERS. THIS PAST SERIES BROUGHT IN A TOTAL OF 727 ATTENDEES. THERE IS NO COST TO THE PARTICIPANTS OTHER THAN THEIR OWN PERSONAL TRAVEL EXPENSES. IN MANY CASES THESE PROGRAMS ARE PLANNED IN CONJUNCTION WITH ALPHA-1 FOUNDATION-AFFILIATED CLINICAL RESOURCE CENTERS. A DINNER OR EVENT IS HELD IN CONJUNCTION WITH EACH DAY TO PROVIDE ALPHAS AND THEIR FAMILIES AN OPPORTUNITY TO INTERACT WITH OTHER PATIENTS, SPEAKERS, AND EXHIBITORS. CONTINUING EDUCATION CREDITS ARE OFFERED TO RESPIRATORY THERAPISTS AND GENETIC COUNSELORS WHO ATTEND THESE PROGRAMS. PRESENTATIONS FROM THIS SERIES ARE MOUNTED ON THE ASSOCIATION'S WEBSITE E-EDUCATION SITE FOR VIEWING AT WWW.ALPHA1.ORG.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt0315193
IRS990/ProgSrvcAccomActyOtherGrp/Desc0OTHER PROGRAM SERVICES: THE ALPHA-1 ASSOCIATION'S GENETIC COUNSELING PROGRAM OFFERS FREE PHONE BASED CONFIDENTIAL INFORMATION AND RESOURCES TO ALPHAS, FAMILY MEMBERS, AND MEDICAL PROFESSIONALS ON THE GENETICS OF ALPHA-1, TESTING OPTIONS AND THE RISKS AND BENEFITS OF TESTING. THE CERTIFIED GENETIC COUNSELOR HELPS PEOPLE UNDERSTAND AND ADAPT TO THE MEDICAL, PSYCHOLOGICAL, AND FAMILY IMPLICATIONS OF GENETIC CONTRIBUTIONS TO DISEASE, PROVIDES SUPPORTIVE COUNSELING, AND REFERRAL TO COMMUNITY OR STATE SUPPORT SERVICES.ADVOCACY (PUBLIC POLICY) HAS BEEN A VITAL PART OF THE ALPHA-1 ASSOCIATION'S MISSION SINCE ITS INCEPTION. ITS ADVOCACY PROGRAM MONITORS FEDERAL LEGISLATION AND REGULATIONS THAT AFFECT INDIVIDUALS AND FAMILIES LIVING WITH ALPHA-1. THE ASSOCIATION MAINTAINS A PRESENCE IN WASHINGTON, DC AND COLLABORATES CLOSELY WITH THE ALPHA-1 FOUNDATION AND OTHER ORGANIZATIONS WITH SIMILAR PUBLIC POLICY GOALS.THE ASSOCIATION PRODUCES A NEWSLETTER, ALPHA-1 NEWS, AND A MONTHLY E-NEWSLETTER, COMMUNITY CURRENTS, WHICH BRINGS NEWS AND INFORMATION TO MORE THAN 10,000 PATIENTS AND THEIR FAMILIES, CAREGIVERS, AND MEDICAL PROFESSIONALS. THE ASSOCIATION'S WEBSITE (WWW.ALPHA1.ORG) PROVIDES E-EDUCATION, COMMUNITY FORUMS, AND A WEALTH OF RESOURCES AND INFORMATION FOR ALPHAS AND THEIR FAMILIES.OTHER PROGRAM SERVICES: THE ASSOCIATION HAD OTHER PROGRAM EXPENSES WHICH INCLUDED SPECIAL PROJECTS, AWARDS AND GRANTS AND OTHER PROGRAM EXPENSES.
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt0504782
IRS990/ProgSrvcAccomActyOtherGrp/GrantAmt046135
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt01323464
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt052616
IRS990/PYInvestmentIncomeAmt01614
IRS990/PYOtherExpensesAmt0952977
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt0159850
IRS990/PYRevenuesLessExpensesAmt0-113180
IRS990/PYSalariesCompEmpBnftPaidAmt0592515
IRS990/PYTotalExpensesAmt01598108
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt01484928
IRS990/QuidProQuoContributionsInd00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0-293256
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/RevenueAmt098131
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0503253
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0499512
IRS990ScheduleA/Form990ScheduleAPartIVGrp/ExplanationTxt0THE ALPHA-1 ASSOCIATION MAINTAINS AN ONGOING DONOR SOLICITATION PROGRAM FROM THE GENERAL PUBLIC, THE ALPHA-1 COMMUNITY, ITS MEMBERSHIP AND PUBLIC CHARITIES. A DONOR RECOGNITION PROGRAM IS IN PLACE. FUNDRAISING ACTIVITIES INCLUDES AN ANNUAL APPEAL FOR FUNDS, NEW MEMBERSHIPS, A GRASSROOTS FUNDRAISING DRIVE AND SPECIFIC FUNDRAISING EVENTS THROUGHOUT THE YEAR. THE BOARD OF DIRECTORS HAS A DEVELOPMENT STANDING COMMITTEE TO OVERSEE FUNDRAISING EFFORTS. PUBLIC SUPPORT IS AT 26.68 % AN INCREASE OF .29% OVER LAST YEAR. EIGHTY-SEVEN PER CENT OF THE ASSOCIATION'S EXPENSES GO DIRECTLY TO VITAL PROGRAMS FOR PATIENTS. THE PRIMARY BENEFICIARIES OF THE ASSOCIATION'S FREE PROGRAMS AND SERVICES ARE INDIVIDUALS AFFECTED BY THE GENETIC CONDITION, ALPHA-1 ANTITRYPSIN DEFICIENCY (ALPHA-1) AND THEIR FAMILIES. ALPHA-1 IS A RARE DISORDER THAT AFFECTS AN ESTIMATED 100,000 INDIVIDUALS IN THE US, OF WHICH LESS THAN 10,000 HAVE BEEN DIAGNOSED. MANIFESTATION AND TREATMENT OF ALPHA-1 IS NOT WELL KNOWN IN THE MEDICAL COMMUNITY. PATIENTS AND PROFESSIONALS ARE IN NEED OF INFORMATION AND MEDICAL EDUCATION TO IMPROVE QUALITY OF LIFE, AND TO DEAL WITH THE IMPACT OF THIS LIFE-THREATENING AND LIFESTYLE LIMITING GENETIC CONDITION. ALPHA-1 CAN CAUSE SEVERE FINANCIAL PRESSURES ON FAMILIES OF THOSE AFFECTED, WHICH ADVERSELY IMPACTS THE ABILITY OF THE ASSOCIATION TO RAISE SIGNIFICANT FUNDS FROM CONSTITUENTS. THE ASSOCIATION WAS ESTABLISHED IN 1991 TO ADDRESS MULTIPLE NEEDS OF PATIENTS DIAGNOSED WITH ALPHA-1. SEED FUNDING CAME FROM COMPANIES PROVIDING PRODUCTS AND SERVICES TO THE PATIENT COMMUNITY. THESE COMPANIES CONTINUE TO HELP FUND THE ASSOCIATION AND ARE SUPPORTIVE OF THE ASSOCIATION MISSION. ALL PROGRAMS ARE DEVELOPED WITHOUT INFLUENCE OR INVOLVEMENT FROM CORPORATE CONTRIBUTORS. THE BOARD OF DIRECTORS IS COMPRISED OF INDIVIDUALS WHO ARE EITHER DIAGNOSED WITH ALPHA-1, FIRST DEGREE RELATIVES OR PHYSICIANS. DIRECTORS RESIDE IN DIVERSE GEOGRAPHIC REGIONS OF THE COUNTRY AND REPRESENT A SPECTRUM OF THE VARIOUS DISEASE STATES OF ALPHA-1 WHICH INCLUDE LUNG DISEASE AND LIVER DISEASE, AS WELL AS PARENTS WITH ALPHA-1 CHILDREN. A MEMBERSHIP DRIVE IS CONDUCTED ANNUALLY THROUGH DIRECT MAIL TO 9,500+ MEMBERS AND CONSTITUENTS. THE DUES STRUCTURE MAKES MEMBERSHIP AFFORDABLE AND ACCESSIBLE TO A BROAD CROSS SECTION OF THE PUBLIC. INDIVIDUALS WHO CANNOT AFFORD THE MEMBERSHIP FEE MAY RECEIVE AN ASSOCIATE MEMBERSHIP WITH FULL PRIVILEGES AT NO COST. THE ALPHA-1 ASSOCIATION PROVIDES FREE PROGRAMS AND SERVICES FOR THE BENEFIT OF THE GENERAL PUBLIC, INCLUDING A NATIONAL NETWORK OF 80 VOLUNTEER SUPPORT GROUPS IN LOCAL COMMUNITIES; FOUR VIRTUAL TELEPHONE SUPPORT GROUPS, A PATIENT HOTLINE, GENETIC COUNSELING PROGRAM, SIX ANNUAL REGIONAL EDUCATION PROGRAMS AND A NATIONAL EDUCATION CONFERENCE. MORE THAN 750 VOLUNTEERS ASSIST THE BOARD AND STAFF IN CARRYING OUT THE MISSION. ITS WEBSITE (WWW.ALPHA1.ORG) SERVES AS A INFORMATION AND EDUCATIONAL RESOURCE FOR ASSOCIATION CONSTITUENTS. ALPHA-1 NEWS, AND ELECTRONIC NEWSLETTER BRINGS NEWS AND INFORMATION TO MEMBERS, PATIENTS AND THEIR FAMILIES, CAREGIVERS AND MEDICAL PROFESSIONALS.
IRS990ScheduleA/Form990ScheduleAPartIVGrp/FormAndLineReferenceDesc0LINE 6
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt01314389
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt01323464
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt01256578
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt01166733
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt01330023
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt06391187
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt0724
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt01614
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt02310
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt04660
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt04878
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt014186
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt0433183
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.26680
IRS990ScheduleA/PublicSupportPY170Pct00.26290
IRS990ScheduleA/PublicSupportTotal170Amt01708638
IRS990ScheduleA/SubstantialContributorsTotAmt04682549
IRS990ScheduleA/TenPctFactsCrcmstncsTestCYInd0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt01314389
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt01323464
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt01256578
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt01166733
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt01330023
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt06391187
IRS990ScheduleA/TotalSupportAmt06405373
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd01
IRS990ScheduleC/DirectContactLegislatorsAmt010000
IRS990ScheduleC/DirectContactLegislatorsInd01
IRS990ScheduleC/GrantsOtherOrganizationsInd00
IRS990ScheduleC/MailingsMembersInd00
IRS990ScheduleC/MediaAdvertisementsInd00
IRS990ScheduleC/NotDescribedSection501c3Ind00
IRS990ScheduleC/OtherActivitiesInd00
IRS990ScheduleC/PaidStaffOrManagementInd00
IRS990ScheduleC/PublicationsOrBroadcastInd00
IRS990ScheduleC/RalliesDemonstrationsInd00
IRS990ScheduleC/SupplementalInformationDetail/ExplanationTxt0THE ALPHA-1 ASSOCIATION ENSURED THAT THE AFFORDABLE CARE ACT INCLUDED PROVISIONS FAVORABLE TO THOSE LIVING WITH CHRONIC DISEASE. THIS WAS ACHIEVED BY CONTACT WITH MEMBERS OF CONGRESS AND THEIR STAFF AND THRU PUBLIC TESTIMONY AT MEETINGS CONVENED BY THE CENTERS FOR MEDICARE AND MEDICAID SERVICES. THE ALPHA-1 ASSOCIATION SUPPORTED LEGISLATION TO IMPROVE ACCESS TO CARE THRU MEETINGS WITH MEMBERS OF CONGRESS AND THEIR STAFF.
IRS990ScheduleC/SupplementalInformationDetail/FormAndLineReferenceDesc0PART II-B, LINE 1:
IRS990ScheduleC/TotalLobbyingExpendituresAmt010000
IRS990ScheduleC/VolunteersInd01
IRS990ScheduleD/EquipmentGrp/BookValueAmt07838
IRS990ScheduleD/EquipmentGrp/DepreciationAmt014549
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt022387
IRS990ScheduleD/ExpensesNotReportedAmt00
IRS990ScheduleD/ExpensesNotRptFinclStmtAmt00
IRS990ScheduleD/ExpensesSubtotalAmt01758096
IRS990ScheduleD/FootnoteTextInd0X
IRS990ScheduleD/OtherRevenueAmt015904
IRS990ScheduleD/RevenueNotReportedAmt015904
IRS990ScheduleD/RevenueNotReportedFinclStmtAmt00
IRS990ScheduleD/RevenueSubtotalAmt01464840
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0A TAX EXPENSE OR BENEFIT FROM AN UNCERTAIN INCOME TAX POSITION (INCLUDING TAX EXEMPT STATUS) MAY BE RECOGNIZED ONLY WHEN IT IS MORE LIKELY THAN NOT THAT THE POSITION WILL BE SUSTAINED UPON EXAMINATION BY TAXING AUTHORITIES. MANAGEMENT BELIEVES THE ASSOCIATION HAS NO UNCERTAIN INCOME TAX POSITIONS THAT WOULD RESULT IN AN ACCRUAL, EXPENSE OR BENEFIT IN A MATERIAL AMOUNT UNDER THE MORE LIKELY THAN NOT STANDARD.
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt1LOSS ON DISPOSAL OF ASSETS 15,904.
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0PART X, LINE 2:
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc1PART XI, LINE 2D - OTHER ADJUSTMENTS:
IRS990ScheduleD/TotalBookValueLandBuildingsAmt07838
IRS990ScheduleD/TotalExpensesPerForm990Amt01758096
IRS990ScheduleD/TotalRevenuePerForm990Amt01464840
IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt01480744
IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt01758096
IRS990ScheduleI/GrantRecordsMaintainedInd01
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt019299
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt117000
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt227099
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt32036
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt0GRASS ROOTS GRANTS
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt1EDUCATIONAL SCHOLARSHIPS
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt2EMERGENCY RELIEF
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt3OXYGEN RELIEF

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