Liabilities / Assets
59th percentile
Higher debt load relative to assets than 59% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
59th percentile
Higher debt load relative to assets than 59% of similar nonprofits.
Liabilities / Revenue
68th percentile
Higher debt load relative to revenue than 68% of similar nonprofits.
Net Margin
78th percentile
Higher net margin than 78% of similar nonprofits.
Top Officer Pay
73rd percentile
Higher top officer pay than 73% of similar nonprofits.
Top officer pay equals 11.2% of source-year revenue.
Asset Growth
83rd percentile
Faster asset growth than 83% of similar nonprofits.
Revenue Growth
78th percentile
Faster revenue growth than 78% of similar nonprofits.
Assets
Up$1,658,126
Up $327,670 (+25%) from 2018
Net Assets
Up$1,418,950
Up $222,127 (+19%) from 2018
Liabilities
Up$239,176
Up $105,543 (+79%) from 2018
Revenue
Up$990,158
Up $194,526 (+24%) from 2018
Expenses
Up$782,772
Up $175,317 (+29%) from 2018
Net Income
Up$207,386
Up $19,209 (+10%) from 2018
To support efforts to cure von-hippel-lindau disease; to provide a support network for patients & their families; to educate & inform the public & the medical community on current developments.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Investments Other Securities | $693,690 | $980,484 | ▲ $286,794 |
| Investments in Publicly Traded Securities | - | $452,866 | - |
| Savings and Temporary Cash Investments | $555,076 | $159,353 | ▼ $395,723 |
| Cash and Non-Interest-Bearing Accounts | $55,165 | $42,014 | ▼ $13,151 |
| Pledges and Grants Receivable | $8,240 | $13,583 | ▲ $5,343 |
| Prepaid Expenses and Deferred Charges | $17,912 | $9,145 | ▼ $8,767 |
| Land, Buildings, and Equipment, Net | $373 | $681 | ▲ $308 |
| Total Assets | $1,330,456 | $1,658,126 | ▲ $327,670 |
| Liabilities | |||
| Grants Payable | $91,667 | $216,667 | ▲ $125,000 |
| Accounts Payable and Accrued Expenses | $20,714 | $20,771 | ▲ $57 |
| Deferred Revenue | $21,252 | $1,181 | ▼ $20,071 |
| Other Liabilities | $0 | $557 | ▲ $557 |
| Total Liabilities | $133,633 | $239,176 | ▲ $105,543 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $1,196,823 | $1,393,950 | ▲ $197,127 |
| Temporarily Rstr Net Assets | - | $25,000 | - |
| Total Net Assets Fund Balance | $1,196,823 | $1,418,950 | ▲ $222,127 |
| Total Liabilities and Net Assets / Fund Balance | $1,330,456 | $1,658,126 | ▲ $327,670 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $681 | $4,635 | $5,316 |
| Other Securities | $524,564 | - | - |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Ilene Sussman | Executive Director | FT | $111,298 | $111,298 |
| Name | Title |
|---|---|
| Doug Karle | President/board Chair |
| Camron King | Board Vice Chair/director |
| Anna Waller | Director |
| Barbara Correll | Director |
| Connie Rath Ed | Director |
| Deanna Wickizer | Director |
| Emily Billcheck | Director |
| Eric Jonasch Md | Director |
| Gordon Cooke | Director |
| Jennifer Galenkamp | Director |
| Julie Woodruff Md | Director |
| Mark Pallansch | Director |
| Soniya Sapre | Director |
| Stacy Lloyd Mph | Director |
| Steven Angotti Jd | Director |
| Jane Beasley | Secretary & Director |
| Seth Horwitz | Treasurer & Director |
| Line Item | Amount |
|---|---|
| Salaries, Compensation, and Employee Benefits | $343,325 |
| Grants and Similar Amounts Paid | $275,000 |
| Other Expenses | $164,447 |
| Total Fundraising Expense | $57,803 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Grants to Domestic Individuals | $275,000 | - | - | $275,000 |
| Other Salaries and Wages | $177,044 | $1,946 | $15,564 | $194,554 |
| Current Officers, Directors, Trustees, and Key Employees | $102,393 | $1,125 | $9,001 | $112,519 |
| All Other Expenses | $17,419 | $2,904 | $5,908 | $26,231 |
| Payroll Taxes | $23,452 | $258 | $2,062 | $25,772 |
| Conferences and Meetings | $24,922 | - | - | $24,922 |
| Occupancy | $16,702 | $184 | $1,468 | $18,354 |
| Travel | $11,713 | $79 | $5,523 | $17,315 |
| Fees for Services Other | $8,494 | $4,829 | $596 | $13,919 |
| Other Employee Benefits | $7,860 | - | $2,620 | $10,480 |
| Other Expenses | $7,507 | $403 | $7,789 | $7,507 |
| Fees for Services Accounting | $5,785 | $65 | $650 | $6,500 |
| Fees for Services Legal | - | - | $5,800 | $5,800 |
| Insurance | $2,612 | - | - | $2,612 |
| Information Technology | - | $-257 | $822 | $565 |
| Depreciation Depletion | $201 | - | - | $201 |
| Total Functional Expenses | $713,433 | $11,536 | $57,803 | $782,772 |
| Line Item | Amount |
|---|---|
| Total Expenses per Audited Statements | $874,067 |
| Expenses per Audited Statements | $782,772 |
| Total Expenses per Form 990 | $782,772 |
| Expenses Not Reported on Form 990 | $91,295 |
| Expenses Not Reported on Financial Statements | $0 |
| Region | Activity | Services | Offices | Employees | Spending |
|---|---|---|---|---|---|
| North America | Research Grant to Recipient Located in Region | - | 0 | 0 | $100,000 |
| Line Item | Amount |
|---|---|
| Fundraising Direct Expenses | $17,546 |
| Fundraising Gross Income | $0 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Annual Meeting & Conference | $86,174 | - | $17,546 | - |
| Constituency Events | $82,652 | - | - | - |
| Total Events | $224,557 | - | $17,546 | $-17,546 |
| Liability | Amount |
|---|---|
| Payroll Withholdings | $557 |
“The completed form 990 is provided to the board of directors for review and approval before filing electronically with the internal revenue service.”
“The organization maintains an annual signed disclosure to monitor compliance with its conflict of interest policy.”
“Compensation for the organization's executive director and key employees is part of the budgeting process for the board of directors. Comparability data is used as part of the budget determination process. The board of directors determines the approved budgeted payroll figures annually.”
“The organization makes its governing documents and annual information returns and financial statements available upon request. Additionally, the organization's documents, returns and statements are available on the website of the commonwealth of massachusetts. The organization's form 990 is also available on the guidestar website.”
“Outside services: program service expenses 6,602. Management and general expenses 4,808. Fundraising expenses 430. Total expenses 11,840. Payroll service fees: program service expenses 1,892. Management and general expenses 21. Fundraising expenses 166. Total expenses 2,079.”
“Public relations: program service expenses 3,848. Management and general expenses 5. Fundraising expenses 1,961. Total expenses 5,814. Postage & shipping: program service expenses 4,150. Management and general expenses 690. Fundraising expenses 128. Total expenses 4,968. Filing fees: program service expenses 0. Management and general expenses 269. Fundraising expenses 3,276. Total expenses 3,545. Program supplies: program service expenses 1,337. Management and general expenses 1,433. Fundraising expenses 118. Total expenses 2,888. Telephone: program service expenses 2,372. Management and general expenses 281. Fundraising expenses 205. Total expenses 2,858. Patient registry: program service expenses 2,267. Management and general expenses 0. Fundraising expenses 0. Total expenses 2,267. Miscellaneous: program service expenses 1,920. Management and general expenses 18. Fundraising expenses 220. Total expenses 2,158. Dues & subscriptions: program service expenses 1,525. Management and general expenses 208. Fundraising expenses 0. Total expenses 1,733.”
“There have been no changes to the audit committee processes.”
“Management has evaluated significant tax positions against criteria established by professional standards and believes there are no such tax positions requiring accounting recognition in the financial statements. Management does not believe its evaluation of tax positions will significantly change within twelve months of june 30, 2019. Any changes in tax positions will be recorded when the ultimate outcome becomes known. The organization's annual information returns are currently subject to examination by taxing authorities for the years ended june 30, 2016 through june 30, 2019.”
“Donated services 51,609. Donated travel 4,727. Donated software 15,931. Donated constituency event costs 1,482.”
“Direct expense of events reported as negative revenues -17,546.”
“Donated constituency event costs 1,482. Donated services 51,609. Donated travel 4,727. Donated software 15,931. Direct expense of events reported as negative revenues 17,546.”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
| IRS990/AccountantCompileOrReviewInd | 0 | 0 |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 20714 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 20771 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | TO SUPPORT EFFORTS TO CURE VON-HIPPEL-LINDAU DISEASE; TO PROVIDE A SUPPORT NETWORK FOR PATIENTS & THEIR FAMILIES; TO EDUCATE & INFORM THE PUBLIC & THE MEDICAL COMMUNITY ON CURRENT DEVELOPMENTS. |
| IRS990/AllOtherContributionsAmt | 0 | 710976 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 5908 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 2904 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 17419 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 26231 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/AuditCommitteeInd | 0 | 0 |
| IRS990/BackupWthldComplianceInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | ILENE SUSSMAN EXEC DIR |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 6172775667 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 1208 VFW PARKWAY 303 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | BOSTON |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | MA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 021324344 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOfficerEntInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 55165 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 42014 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 9001 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 1125 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 102393 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 112519 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 1 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 24922 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 24922 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContriRptFundraisingEventAmt | 0 | 224557 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 935533 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 275000 |
| IRS990/CYInvestmentIncomeAmt | 0 | 8685 |
| IRS990/CYOtherExpensesAmt | 0 | 164447 |
| IRS990/CYOtherRevenueAmt | 0 | -15017 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 60957 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 207386 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 343325 |
| IRS990/CYTotalExpensesAmt | 0 | 782772 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 57803 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 990158 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 0 |
| IRS990/DeferredRevenueGrp/BOYAmt | 0 | 21252 |
| IRS990/DeferredRevenueGrp/EOYAmt | 0 | 1181 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 201 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 201 |
| IRS990/Desc | 0 | THE VHL ALLIANCE PROVIDES A QUARTERLY NEWSLETTER, ON-LINE SERVICES, TELEPHONE OUTREACH AND OTHER SERVICES FOR VHL PATIENTS & FAMILY MEMBERS TO BE ABLE TO COMMUNICATE CURRENT VHL RESEARCH & MEDICAL INFORMATION. THE VHL ALLIANCE ALSO PROVIDES EDUCATIONAL MATERIAL INCLUDING PATIENT HANDBOOKS AND BROCHURES ON LIVING WITH VHL DISEASE, THE VHL ALLIANCE ALSO HOLDS MEDICAL/RESEARCH SYMPOSIUMS, AN ANNUAL CONFERENCES & RECURRING SEMINARS, AND MAINTAINS EDUCATION & RESEARCH PROGRAMS SUCH AS THE TISSUE BANK AND THE CENTRAL VHL DATABASE. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 5 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 713433 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 650 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 65 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 5785 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 6500 |
| IRS990/FeesForServicesLegalGrp/FundraisingAmt | 0 | 5800 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 5800 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 596 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 4829 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 8494 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 13919 |
| IRS990/ForeignActivitiesInd | 0 | 1 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 16 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 17 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 7 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 8 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 9 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 10 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 11 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 12 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 13 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 14 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 15 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 16 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 17 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 17 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | DOUG KARLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | CAMRON KING |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | JANE BEASLEY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | SETH HORWITZ |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | STEVEN ANGOTTI JD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | EMILY BILLCHECK |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | BARBARA CORRELL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | GORDON COOKE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | JENNIFER GALENKAMP |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | ERIC JONASCH MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | STACY LLOYD MPH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | MARK PALLANSCH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | CONNIE RATH ED |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | SONIYA SAPRE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | ANNA WALLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | DEANNA WICKIZER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 16 | JULIE WOODRUFF MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 17 | ILENE SUSSMAN |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 17 | 111298 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 17 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | PRESIDENT/BOARD CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | BOARD VICE CHAIR/DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | SECRETARY & DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | TREASURER & DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 16 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 17 | EXECUTIVE DIRECTOR |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 1993 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | 1 |
| IRS990/FundraisingActivitiesInd | 0 | 1 |
| IRS990/FundraisingAmt | 0 | 224557 |
| IRS990/FundraisingDirectExpensesAmt | 0 | 17546 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 0 |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | -10292 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 18 |
| IRS990/GrantAmt | 0 | 275000 |
| IRS990/GrantsPayableGrp/BOYAmt | 0 | 91667 |
| IRS990/GrantsPayableGrp/EOYAmt | 0 | 216667 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 275000 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 275000 |
| IRS990/GrantsToIndividualsInd | 0 | 1 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 1329074 |
| IRS990/GrossReceiptsAmt | 0 | 2347070 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 1 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 17 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 822 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | -257 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 565 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 2612 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 2612 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 18977 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 18977 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/InvestmentsOtherSecuritiesGrp/BOYAmt | 0 | 693690 |
| IRS990/InvestmentsOtherSecuritiesGrp/EOYAmt | 0 | 980484 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 452866 |
| IRS990/IRPDocumentCnt | 0 | 1 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 4635 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 373 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 681 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 5316 |
| IRS990/LegalDomicileStateCd | 0 | MA |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 1339366 |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 1 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 0 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | THE VHL ALLIANCE IS DEDICATED TO RESEARCH, EDUCATION, AND SUPPORT TO IMPROVE AWARENESS, DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR THOSE AFFECTED BY VHL DISEASE. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 1 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 1196823 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 1418950 |
| IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt | 0 | -10292 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | -10292 |
| IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt | 0 | -17546 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | -17546 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 14741 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 1468 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 184 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 16702 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 18354 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 2620 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 7860 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 10480 |
| IRS990/OtherExpensesGrp/Desc | 0 | OUTREACH, WEBINARS & SU |
| IRS990/OtherExpensesGrp/Desc | 1 | PRINTING & REPRODUCTION |
| IRS990/OtherExpensesGrp/Desc | 2 | BANK CHARGES |
| IRS990/OtherExpensesGrp/Desc | 3 | SOFTWARE COSTS |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 7789 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 403 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 19447 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 12808 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 74 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 7507 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 19447 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 13211 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 7863 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 7507 |
| IRS990/OtherLiabilitiesGrp/BOYAmt | 0 | 0 |
| IRS990/OtherLiabilitiesGrp/EOYAmt | 0 | 557 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 900099 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | MISCELLANEOUS INCOME |
| IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt | 0 | 2529 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 2529 |
| IRS990/OtherRevenueTotalAmt | 0 | 2529 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 15564 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 1946 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 177044 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 194554 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 2062 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 258 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 23452 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 25772 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 8240 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 13583 |
| IRS990/PoliciesReferenceChaptersInd | 0 | 1 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 17912 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 9145 |
| IRS990/PrincipalOfficerNm | 0 | SETH HORWITZ |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 624100 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 1 | 511120 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | CONFERENCES & SYMPOSIA |
| IRS990/ProgramServiceRevenueGrp/Desc | 1 | PAMPHLET SALES |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 60150 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 1 | 807 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 60150 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 1 | 807 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 825508 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 125000 |
| IRS990/PYInvestmentIncomeAmt | 0 | 13391 |
| IRS990/PYOtherExpensesAmt | 0 | 132495 |
| IRS990/PYOtherRevenueAmt | 0 | -48146 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 4879 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 188177 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 349960 |
| IRS990/PYTotalExpensesAmt | 0 | 607455 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 795632 |
| IRS990/QuidProQuoContributionsInd | 0 | 0 |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 207386 |
| IRS990/RegularMonitoringEnfrcInd | 0 | 1 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 1 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 1 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 1 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/RevenueAmt | 0 | 63486 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 555076 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 159353 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt | 0 | 220000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt | 0 | 10000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt | 0 | 24000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt | 0 | 20000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus4YearsAmt | 0 | 20342 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt | 0 | 294342 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | MISCELLANEOUS REVENUE - 2014 AMOUNT: $ 1,400. 2015 AMOUNT: $ 2,025. 2016 AMOUNT: $ 1,725. 2017 AMOUNT: $ 1,462. 2018 AMOUNT: $ 2,529. |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 935533 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 825508 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 853983 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 649068 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 664845 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 3928937 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt | 0 | 18977 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 12764 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 5685 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 5037 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 5562 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 48025 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt | 0 | 60957 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt | 0 | 4879 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt | 0 | 21187 |
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Displayed year
2019 • Form 990Detailed filing. Detailed filing data is available for this year.