Liabilities / Assets
75th percentile
Higher debt load relative to assets than 75% of similar nonprofits.
Hereditary Angioedema Association Inc.
990 • Fiscal year 2017 • EIN 25-1852548
Siviq Scores
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
0.38x
Liabilities / Revenue
76th percentile
Higher debt load relative to revenue than 76% of similar nonprofits.
Net Margin
11th percentile
Higher net margin than 11% of similar nonprofits.
Top Officer Pay
89th percentile
Higher top officer pay than 89% of similar nonprofits.
Top officer pay equals 4.6% of source-year revenue.
Asset Growth
5th percentile
Faster asset growth than 5% of similar nonprofits.
Revenue Growth
59th percentile
Faster revenue growth than 59% of similar nonprofits.
Balance Sheet
Assets
Down$4,715,448
Down $1,346,985 (-22%) from 2016
Net Assets
Down$2,935,710
Down $1,126,302 (-28%) from 2016
Liabilities
Down$1,779,738
Down $220,683 (-11%) from 2016
Revenue And Expenses
Revenue
Up$4,155,823
Up $325,437 (+8.5%) from 2016
Expenses
Down$5,282,125
Down $8,905 (-0.2%) from 2016
Net Income
Up-$1,126,302
Up $334,342 (+23%) from 2016
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jan 1, 2017 to Dec 31, 2017
- Signed
- Oct 31, 2018
- Return Version
- 2017v2.2
- Gross Receipts
- $4,155,823
Mission and Program Overview
Mission
To provide a variety of services to help patients cope with hereditary angioedema, and foster research, patient education, and access to and reimbursement for new therapies.
SEE SCHEDULE O COMMENT.
Balance Sheet Detail
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Savings and Temporary Cash Investments | $5,035,724 | $4,711,792 | ▼ $323,932 |
| Cash and Non-Interest-Bearing Accounts | $259,904 | - | - |
| Accounts Receivable | $763,389 | $2,050 | ▼ $761,339 |
| Prepaid Expenses and Deferred Charges | $2,138 | $1,000 | ▼ $1,138 |
| Land, Buildings, and Equipment, Net | $1,278 | $606 | ▼ $672 |
| Total Assets | $6,062,433 | $4,715,448 | ▼ $1,346,985 |
| Liabilities | |||
| Other Liabilities | $1,942,601 | $1,680,981 | ▼ $261,620 |
| Accounts Payable and Accrued Expenses | $57,820 | $98,757 | ▲ $40,937 |
| Total Liabilities | $2,000,421 | $1,779,738 | ▼ $220,683 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $3,904,170 | $2,591,032 | ▼ $1,313,138 |
| Temporarily Rstr Net Assets | $157,842 | $344,678 | ▲ $186,836 |
| Total Net Assets Fund Balance | $4,062,012 | $2,935,710 | ▼ $1,126,302 |
| Total Liabilities and Net Assets / Fund Balance | $6,062,433 | $4,715,448 | ▼ $1,346,985 |
Asset Categories
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $606 | $26,988 | $27,594 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Anthony Castaldo | President | FT | $190,759 | $190,759 |
| Larry Salus | Directorfinancial Director | PT | $58,100 | $58,100 |
Board Members and Trustees
| Name | Title |
|---|---|
| Dr Eric Phillips | Director |
| Herick Balle Boysen | Director |
| Karen Baird | Director |
| Tricia Mullins | Director |
Highest Paid Contractors
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| King Biologistics | Business Developme | 27 BROOK STREET, Jamestown, RI 02836 | $119,700 |
| Global Patient Strategies LLC | Scientific Registe | 27 BROOK STREET, Jamestown, RI 02836 | $112,500 |
Revenue and Support
Revenue Composition
- Contributions and Grants
- $4,127,702
- Program Service Revenue
- $0
- Investment Income
- $28,121
- Other Revenue
- $0
- All Other Contributions
- $4,093,137
- Change in Net Assets
- $-1,126,302
Audited Revenue Reconciliation
- Revenue per Audited Statements
- $4,155,823
- Total Revenue per Audited Statements
- $4,155,823
- Total Revenue per Form 990
- $4,155,823
Expenses and Functional Allocation
Major Expense Lines
| Line Item | Amount |
|---|---|
| Other Expenses | $2,235,034 |
| Salaries, Compensation, and Employee Benefits | $1,900,655 |
| Grants and Similar Amounts Paid | $1,146,436 |
| Total Fundraising Expense | $129,930 |
| Professional Fundraising Fees | $0 |
Functional Expense Allocation
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Other Salaries and Wages | $1,334,353 | $89,450 | - | $1,423,803 |
| All Other Expenses | $788,043 | $300,565 | $129,930 | $1,218,538 |
| Grants to Domestic Orgs | $1,146,436 | - | - | $1,146,436 |
| Current Officers, Directors, Trustees, and Key Employees | $156,899 | $91,960 | - | $248,859 |
| Travel | $183,743 | $14,898 | - | $198,641 |
| Advertising | $139,822 | - | - | $139,822 |
| Payroll Taxes | $113,556 | $13,814 | - | $127,370 |
| Other Expenses | $117,787 | $2,294 | - | $117,787 |
| Fees for Services Other | $55,806 | $45,515 | - | $101,321 |
| Other Employee Benefits | $89,710 | $10,913 | - | $100,623 |
| Information Technology | $37,679 | $4,641 | - | $42,320 |
| Office Expenses | - | $31,456 | - | $31,456 |
| Occupancy | $9,452 | $1,668 | - | $11,120 |
| Conferences and Meetings | $8,742 | - | - | $8,742 |
| Insurance | $7,190 | $799 | - | $7,989 |
| Fees for Services Legal | - | $2,765 | - | $2,765 |
| Depreciation Depletion | $571 | $101 | - | $672 |
| Total Functional Expenses | $4,541,356 | $610,839 | $129,930 | $5,282,125 |
Audited Expense Reconciliation
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $5,282,125 |
| Total Expenses per Audited Statements | $5,282,125 |
| Total Expenses per Form 990 | $5,282,125 |
International Activity
Grant and Assistance Recipients
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Uc San Diego Foundation | La Jolla, CA | 501c3 | Research & Medicine | $1,146,436 |
Fundraising, Events, and Gaming
- Fundraising activities
- Yes
- Gaming activities
- No
- Professional fundraiser used
- No
Fundraising and Gaming Totals
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
Fundraising Events
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Hae Sponsor | $34,565 | $34,565 | - | $34,565 |
| Total Events | $34,565 | $34,565 | - | $34,565 |
Political and Lobbying Activity
- Political campaign activity
- No
- Lobbying activity
- Yes
- Subject to proxy tax
- No
Debt and Bond Financing
Other Reported Liabilities
| Liability | Amount |
|---|---|
| Pledge to Univ Cali San Diego Fou | $1,680,981 |
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 governing body review Part VI line 11
“The president and finance director are assigned responsibility for review and approval of the federal form 990 with the support of the financial director. The board of directors affirms the filing provided.”
Conflict of interest policy compliance Part VI line 12C
“The board of directors provide self-declarations of possible conflicts of interest as part of the annual meeting responsibilites. Key employees also provide an annual self-declaration. Potential conflicts identified are reviewed and approved if appropriate as a part of the board of directors routine responsibilties.”
CEO executive director top management comp Part VI line 15A
“The board of directors performs an informal review of the presidents salary for comparable responsibilties of like-size and type organizations with recognition of the national and international influence of the services provided. Discussions and conclusions are documented as part of the recording of the minutes of the board of directors including their formal approval of the adjusted compensation and benefits.”
Other officer or key employee compensation Part VI line 15B
“The president, with support of the board of directors, performs an informal review of key manager salaries for comparable responsibilties of like-size and type organizations with recognition of the national and international influence of the services provided. Discussions and conclusions are documented as part of the recording of the minutes of the board of directors including their formal approval of the adjusted compensation and benefits.”
Governing documents etc available to public Part VI line 19
“The organization makes all federal information filings available upon request. Various companies make the federal filings available via the internet.”
Filing and Contact Details
Filer
- Filer Name
- Hereditary Angioedema Association Inc
- EIN
- 25-1852548
- Address
- 10560 MAIN STREET, Fairfax, VA 22030
Signing Officer
- Name
- Larry Salus
- Title
- Financial Direc
- Phone
- 8665808178
- Signed
- 2018-10-31
- Discuss with paid preparer
- Yes
Organization Details
- Principal Officer
- Anthony Castaldo
- Formed
- 2005
- Legal Domicile
- Va
- Voting Board Members
- 6
- Independent Board Members
- 4
- Employees
- 21
- Volunteers
- 800
Preparer
- Firm
- ALLAN SMITH AND COMPANY CPAs PC
- Address
- TWO CABOT PLACE SUITE 8, Stoughton, MA 02072
- Preparer
- Allan Smith Cpc
- Phone
- 7742065553
Supplemental Narrative
Additional Explanations
List of other expenses Part IX line 24E
“The organization holds a bi-annual patient summit intended to bring together individuals with hereditary angioedema, experts in the clinical, research and academia fields, hereditary angioedema association staff as well as those pharmacutical companies that offer successful therapies (and hopeful future therapies) intended to minimize the impact of symptoms of hereditary angioedema on the daily basis.”
General explanation attachment
“PART III: Briefly describe the organizations missionThe Hereditary Angioedema Associations (HAEA) overall goal is to be the force behind (1) thwarting the potentially fatal and debilitating nature of the HAE, and (2) enabling our patient community to achieve life long health. We are a national patient advocacy organization that focuses on: Increasing HAE awareness and education; driving progress in clinical care; helping patients gain access to and reimbursement for optimal treatment; maintaining a strong presence in the health policy legislative and regulatory environments; and fostering molecular level and translational research that features searching for a cure.”
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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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| IRS990ScheduleC/SupplementalInformationDetail/ExplanationTxt | 0 | THE ORGANIZATION WORKS TOWARDS INCREASING AWARENESS OF THE HEREDITARY ANGIOEDEMA DISEASE THROUGH EDUCATION AND ADVOCACY IN SUPPORT OF EXPANDED RESEARCH, PATIENT EDUCATION AND ACCESS TO AND REIMBURSEMENT FOR NEW THERAPIES. POLITICAL ADVOCACY EFFORTS ARE CENTERED AROUND THIS MISSION. |
| IRS990ScheduleC/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Direct and indirect political campaign activities (Part I-A, line 1) |
| IRS990ScheduleC/VolunteersInd | 0 | false |
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| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | PLEDGE TO UNIV CALI SAN DIEGO FOU |
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| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | RESEARCH & MEDICINE |
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| IRS990ScheduleI/RecipientTable/RecipientEIN | 0 | 952872494 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 0 | 9500 GILMAN DRIVE SUITE 0940 |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | La Jolla |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | CA |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 0 | 92093 |
| IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc | 0 | BOOK |
| IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt | 0 | THE ORGANIZATION IS COMMITTED TO ADVANCING AND FACILITATING CLINICAL RESEARCH DESIGNED TO IMPROVE THE LIVES OF HEREDITARY ANGIOEDEMA PATIENTS. IN SUPPORT OF ITS COMMITMENT TO CLINICAL RESEARCH, BEGINNING IN 2012 AND THROUGH THE DATE OF THE FINANCIAL STATEMENTS, THE ORGANIZATION HAS COMMITTED OR PAID MORE THAN SIX MILLION FIVE HUNDRED FIFTEEN THOUSAND DOLLARS TO THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO, ESTABLISHING THE U.S. HAEA ANGIOEDEMA CENTER TO EXPAND AND ENHANCE RESEARCH INITIATIVES FOCUSED ON THIS GENETIC CONDITION. |
| IRS990ScheduleI/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Monitoring procedures (Part I, line 2) |
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| IRS990ScheduleJ/CompensationSurveyInd | 0 | X |
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| IRS990/ScheduleJRequiredInd | 0 | true |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | THE PRESIDENT AND FINANCE DIRECTOR ARE ASSIGNED RESPONSIBILITY FOR REVIEW AND APPROVAL OF THE FEDERAL FORM 990 WITH THE SUPPORT OF THE FINANCIAL DIRECTOR. THE BOARD OF DIRECTORS AFFIRMS THE FILING PROVIDED. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | THE BOARD OF DIRECTORS PROVIDE SELF-DECLARATIONS OF POSSIBLE CONFLICTS OF INTEREST AS PART OF THE ANNUAL MEETING RESPONSIBILITES. KEY EMPLOYEES ALSO PROVIDE AN ANNUAL SELF-DECLARATION. POTENTIAL CONFLICTS IDENTIFIED ARE REVIEWED AND APPROVED IF APPROPRIATE AS A PART OF THE BOARD OF DIRECTORS ROUTINE RESPONSIBILTIES. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | THE BOARD OF DIRECTORS PERFORMS AN INFORMAL REVIEW OF THE PRESIDENTS SALARY FOR COMPARABLE RESPONSIBILTIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFITS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | THE PRESIDENT, WITH SUPPORT OF THE BOARD OF DIRECTORS, PERFORMS AN INFORMAL REVIEW OF KEY MANAGER SALARIES FOR COMPARABLE RESPONSIBILTIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFITS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | THE ORGANIZATION MAKES ALL FEDERAL INFORMATION FILINGS AVAILABLE UPON REQUEST. VARIOUS COMPANIES MAKE THE FEDERAL FILINGS AVAILABLE VIA THE INTERNET. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | THE ORGANIZATION HOLDS A BI-ANNUAL PATIENT SUMMIT INTENDED TO BRING TOGETHER INDIVIDUALS WITH HEREDITARY ANGIOEDEMA, EXPERTS IN THE CLINICAL, RESEARCH AND ACADEMIA FIELDS, HEREDITARY ANGIOEDEMA ASSOCIATION STAFF AS WELL AS THOSE PHARMACUTICAL COMPANIES THAT OFFER SUCCESSFUL THERAPIES (AND HOPEFUL FUTURE THERAPIES) INTENDED TO MINIMIZE THE IMPACT OF SYMPTOMS OF HEREDITARY ANGIOEDEMA ON THE DAILY BASIS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | PART III: Briefly describe the organizations missionThe Hereditary Angioedema Associations (HAEA) overall goal is to be the force behind (1) thwarting the potentially fatal and debilitating nature of the HAE, and (2) enabling our patient community to achieve life long health. We are a national patient advocacy organization that focuses on: Increasing HAE awareness and education; driving progress in clinical care; helping patients gain access to and reimbursement for optimal treatment; maintaining a strong presence in the health policy legislative and regulatory environments; and fostering molecular level and translational research that features searching for a cure. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990 governing body review Part VI line 11 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Conflict of interest policy compliance Part VI line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | CEO executive director top management comp Part VI line 15a |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Other officer or key employee compensation Part VI line 15b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Governing documents etc available to public Part VI line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | List of other expenses Part IX line 24e |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | General explanation attachment |
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Document Assets
No mirrored PDF or thumbnail assets are attached yet.
Filings
Displayed year
2017 • Form 990Detailed filing. Detailed filing data is available for this year.
- Assets
- $4,715,448
- Liabilities
- $1,779,738
- Net assets
- $2,935,710
- Revenue
- $4,155,823
- Expenses
- $5,282,125
- Net income
- -$1,126,302