Liabilities / Assets
52nd percentile
Higher debt load relative to assets than 52% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
52nd percentile
Higher debt load relative to assets than 52% of similar nonprofits.
Liabilities / Revenue
57th percentile
Higher debt load relative to revenue than 57% of similar nonprofits.
Net Margin
83rd percentile
Higher net margin than 83% of similar nonprofits.
Top Officer Pay
68th percentile
Higher top officer pay than 68% of similar nonprofits.
Top officer pay equals 12.1% of source-year revenue.
Asset Growth
84th percentile
Faster asset growth than 84% of similar nonprofits.
Revenue Growth
61st percentile
Faster revenue growth than 61% of similar nonprofits.
Assets
Up$1,126,025
Up $238,878 (+27%) from 2016
Net Assets
Up$1,010,445
Up $223,623 (+28%) from 2016
Liabilities
Up$115,580
Up $15,255 (+15%) from 2016
Revenue
Up$809,881
Up $72,440 (+9.8%) from 2016
Expenses
Down$586,405
Down $109,087 (-16%) from 2016
Net Income
Up$223,476
Up $181,527 (+433%) from 2016
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 | $381,109 | $684,374 | ▲ $303,265 |
| Cash and Non-Interest-Bearing Accounts | $195,512 | $228,696 | ▲ $33,184 |
| Savings and Temporary Cash Investments | $265,238 | $188,773 | ▼ $76,465 |
| Prepaid Expenses and Deferred Charges | $4,904 | $17,902 | ▲ $12,998 |
| Pledges and Grants Receivable | $39,331 | $5,757 | ▼ $33,574 |
| Land, Buildings, and Equipment, Net | $1,053 | $523 | ▼ $530 |
| Total Assets | $887,147 | $1,126,025 | ▲ $238,878 |
| Liabilities | |||
| Grants Payable | $75,000 | $66,667 | ▼ $8,333 |
| Deferred Revenue | $21,915 | $25,862 | ▲ $3,947 |
| Accounts Payable and Accrued Expenses | $3,410 | $23,051 | ▲ $19,641 |
| Total Liabilities | $100,325 | $115,580 | ▲ $15,255 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $771,822 | $1,005,445 | ▲ $233,623 |
| Temporarily Rstr Net Assets | $15,000 | $5,000 | ▼ $10,000 |
| Total Net Assets Fund Balance | $786,822 | $1,010,445 | ▲ $223,623 |
| Total Liabilities and Net Assets / Fund Balance | $887,147 | $1,126,025 | ▲ $238,878 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Other Land Buildings | $374 | $9,425 | $9,799 |
| Equipment | $149 | $3,909 | $4,058 |
| Other Securities | $601,409 | - | - |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Ilene Sussman | Executive Director | FT | $97,807 | $97,807 |
| Name | Title |
|---|---|
| Manuel Greco | President/board Chair |
| Barbara Correll | Board Vice Chair/director |
| Soniya Sapre | Clerk & Director |
| Anna Waller | Director |
| Anoop Mangat | Director |
| Bettina Micheli | Director |
| Doug Karle | Director |
| Eric Jonasch Md | Director |
| Gordon Cooke | Director |
| Jessica Everett Ms Cgc | Director |
| Karen Ramsey | Director |
| Mark Pallansch | Director |
| Andrea Rafael | Treasurer & Director |
| Line Item | Amount |
|---|---|
| Salaries, Compensation, and Employee Benefits | $284,965 |
| Other Expenses | $176,440 |
| Grants and Similar Amounts Paid | $125,000 |
| Total Fundraising Expense | $69,625 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Other Salaries and Wages | $128,072 | $1,203 | $26,321 | $155,596 |
| Current Officers, Directors, Trustees, and Key Employees | $101,400 | $1,035 | $1,035 | $103,470 |
| Grants to Domestic Individuals | $100,000 | - | - | $100,000 |
| Fees for Services Other | $48,640 | $42 | $1,166 | $49,848 |
| Foreign Grants | $25,000 | - | - | $25,000 |
| All Other Expenses | $12,834 | $1,861 | $5,359 | $20,054 |
| Payroll Taxes | $17,321 | $144 | $1,767 | $19,232 |
| Occupancy | $14,065 | $153 | $1,070 | $15,288 |
| Travel | $10,167 | - | $1,578 | $11,745 |
| Other Expenses | $5,721 | $4,150 | $487 | $10,358 |
| Other Employee Benefits | $5,417 | - | $1,250 | $6,667 |
| Fees for Services Legal | - | - | $5,800 | $5,800 |
| Information Technology | $1,878 | $41 | $3,874 | $5,793 |
| Fees for Services Accounting | $5,073 | $57 | $570 | $5,700 |
| Insurance | $2,664 | $29 | $203 | $2,896 |
| Depreciation Depletion | $530 | - | - | $530 |
| Total Functional Expenses | $506,398 | $10,382 | $69,625 | $586,405 |
| Line Item | Amount |
|---|---|
| Total Expenses per Audited Statements | $695,362 |
| Expenses per Audited Statements | $586,405 |
| Total Expenses per Form 990 | $586,405 |
| Expenses Not Reported on Form 990 | $108,957 |
| Expenses Not Reported on Financial Statements | $0 |
| Region | Activity | Services | Offices | Employees | Spending |
|---|---|---|---|---|---|
| North America - Canada & Mexico But Not the U.s. | Research Grant to One Recipient Located in the Region | - | 0 | 0 | $25,000 |
| Line Item | Amount |
|---|---|
| Fundraising Direct Expenses | $77,583 |
| Fundraising Gross Income | $0 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Annual Meeting & Conference | $311,298 | - | $68,656 | - |
| Constituency Events | $77,603 | - | $1,159 | - |
| Total Events | $453,356 | - | $77,583 | $-77,583 |
“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 4,315. Management and general expenses 29. Fundraising expenses 999. Total expenses 5,343. Payroll service fees: program service expenses 1,634. Management and general expenses 13. Fundraising expenses 167. Total expenses 1,814. Berkemeier: program service expenses 42,691. Management and general expenses 0. Fundraising expenses 0. Total expenses 42,691.”
“Postage & shipping: program service expenses 4,201. Management and general expenses 268. Fundraising expenses 255. Total expenses 4,724. Public relations: program service expenses 3,776. Management and general expenses 0. Fundraising expenses 329. Total expenses 4,105. Telephone: program service expenses 3,459. Management and general expenses 29. Fundraising expenses 204. Total expenses 3,692. State filing fees: program service expenses 0. Management and general expenses 269. Fundraising expenses 3,046. Total expenses 3,315. Office & miscellaneous: program service expenses 98. Management and general expenses 463. Fundraising expenses 1,500. Total expenses 2,061. Dues & subscriptions: program service expenses 1,300. Management and general expenses 0. Fundraising expenses 0. Total expenses 1,300. Moving: program service expenses 0. Management and general expenses 832. Fundraising expenses 0. Total expenses 832. Training: program service expenses 0. Management and general expenses 0. Fundraising expenses 25. Total expenses 25.”
“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, 2017. 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, 2014 through june 30, 2017.”
“Donated services 10,247. Donated travel 3,870. Donated software 17,257.”
“Direct expense of events reported as negative revenues -77,583.”
“Donated services 10,247. Donated travel 3,870. Donated software 17,257. Direct expense of events reported as negative revenues 77,583.”
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 | 3410 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 23051 |
| 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 | 405627 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 5359 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 1861 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 12834 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 20054 |
| 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 | 195512 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 228696 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 1035 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 1035 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 101400 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 103470 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 1 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContriRptFundraisingEventAmt | 0 | 453356 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 858983 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 125000 |
| IRS990/CYInvestmentIncomeAmt | 0 | 5569 |
| IRS990/CYOtherExpensesAmt | 0 | 176440 |
| IRS990/CYOtherRevenueAmt | 0 | -75858 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 21187 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 223476 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 284965 |
| IRS990/CYTotalExpensesAmt | 0 | 586405 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 69625 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 809881 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 0 |
| IRS990/DeferredRevenueGrp/BOYAmt | 0 | 21915 |
| IRS990/DeferredRevenueGrp/EOYAmt | 0 | 25862 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 530 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 530 |
| IRS990/Desc | 0 | NEWSLETTER, ON-LINE SERVICE, TELEPHONE SERVICE & OTHER SERVICES FOR VHL PATIENTS & FAMILY MEMBERS TO COMMUNICATE CURRENT VHL RESEARCH & MEDICAL INFORMATION; PROVIDE EDUCATIONAL MATERIAL INCLUDING PATIENT HANDBOOK AND BROCHURES ON LIVING WITH VHL; PROVIDE EDUCATION MATERIAL INCLUDING PATIENT HANDBOOK & BROCHURES ON LIVING WITH VHL; ALSO INCLUDES CONFERENCES & SEMINARS, AND EDUCATION & RESEARCH PROGRAMS INCLUDING TISSUE BANK. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 4 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 506398 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 570 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 57 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 5073 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 5700 |
| IRS990/FeesForServicesLegalGrp/FundraisingAmt | 0 | 5800 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 5800 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 1166 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 42 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 48640 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 49848 |
| IRS990/ForeignActivitiesInd | 0 | 1 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignGrantsGrp/ProgramServicesAmt | 0 | 25000 |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 25000 |
| 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 | 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/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | 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/PersonNm | 0 | MANUEL GRECO |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | ANDREA RAFAEL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | SONIYA SAPRE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | GORDON COOKE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | BARBARA CORRELL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | JESSICA EVERETT MS CGC |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | ERIC JONASCH MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | DOUG KARLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | ANOOP MANGAT |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | BETTINA MICHELI |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | MARK PALLANSCH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | KAREN RAMSEY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | ANNA WALLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | 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 | 97807 |
| 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/TitleTxt | 0 | PRESIDENT/BOARD CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | TREASURER & DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | CLERK & DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | BOARD VICE CHAIR/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 | 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 | 453356 |
| IRS990/FundraisingDirectExpensesAmt | 0 | 77583 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 0 |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | -116 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 13 |
| IRS990/GrantAmt | 0 | 125000 |
| IRS990/GrantsPayableGrp/BOYAmt | 0 | 75000 |
| IRS990/GrantsPayableGrp/EOYAmt | 0 | 66667 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 100000 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 100000 |
| IRS990/GrantsToIndividualsInd | 0 | 1 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 527561 |
| IRS990/GrossReceiptsAmt | 0 | 1415141 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 1 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 13 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 3874 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 41 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 1878 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 5793 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 203 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 29 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 2664 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 2896 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 5685 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 5685 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/InvestmentsOtherSecuritiesGrp/BOYAmt | 0 | 381109 |
| IRS990/InvestmentsOtherSecuritiesGrp/EOYAmt | 0 | 684374 |
| IRS990/IRPDocumentCnt | 0 | 2 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 13334 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 1053 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 523 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 13857 |
| IRS990/LegalDomicileStateCd | 0 | MA |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 527677 |
| 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 | 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/MoreThan5000KToIndividualsInd | 0 | 1 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 786822 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 1010445 |
| IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt | 0 | -116 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | -116 |
| IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt | 0 | -77583 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | -77583 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 147 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 1070 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 153 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 14065 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 15288 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 1250 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 5417 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 6667 |
| IRS990/OtherExpensesGrp/Desc | 0 | BANK CHARGES |
| IRS990/OtherExpensesGrp/Desc | 1 | OUTREACH, WEBINARS & SU |
| IRS990/OtherExpensesGrp/Desc | 2 | PRINTING & PUBLICATIONS |
| IRS990/OtherExpensesGrp/Desc | 3 | SUPPLIES |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 19145 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 487 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 1667 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 4150 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 2080 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 15775 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 9761 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 5721 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 21225 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 15775 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 11428 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 10358 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 900099 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | MISCELLANEOUS INCOME |
| IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt | 0 | 1725 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 1725 |
| IRS990/OtherRevenueTotalAmt | 0 | 1725 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 26321 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 1203 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 128072 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 155596 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 1767 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 144 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 17321 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 19232 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 39331 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 5757 |
| IRS990/PoliciesReferenceChaptersInd | 0 | 1 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 4904 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 17902 |
| IRS990/PrincipalOfficerNm | 0 | ANDREA RAFAEL |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 624100 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 1 | 511120 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | CONFERENCES |
| IRS990/ProgramServiceRevenueGrp/Desc | 1 | PAMPHLET SALES |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 19928 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 1 | 1259 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 19928 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 1 | 1259 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 664068 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 125000 |
| IRS990/PYInvestmentIncomeAmt | 0 | 5094 |
| IRS990/PYOtherExpensesAmt | 0 | 275078 |
| IRS990/PYOtherRevenueAmt | 0 | 2025 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 66254 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 41949 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 295414 |
| IRS990/PYTotalExpensesAmt | 0 | 695492 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 737441 |
| IRS990/QuidProQuoContributionsInd | 0 | 0 |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 223476 |
| 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 | 0 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/RevenueAmt | 0 | 22912 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 265238 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 188773 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt | 0 | 24000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt | 0 | 20000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt | 0 | 20342 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt | 0 | 20242 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus4YearsAmt | 0 | 9665 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt | 0 | 94249 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 853983 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 649068 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 664845 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 509535 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 397103 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 3074534 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt | 0 | 5685 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 5037 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 5562 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 4168 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 3464 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 23916 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt | 0 | 21187 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt | 0 | 66254 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt | 0 | 7616 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt | 0 | 14766 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt | 0 | 5379 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt | 0 | 115202 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt | 0 | 5685 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt | 0 | 5037 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt | 0 | 5562 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | 4168 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 3464 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt | 0 | 23916 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.00740 |
| IRS990ScheduleA/InvestmentIncomePYPct | 0 | 0.00870 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearAmt | 0 | 1725 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 2025 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 1400 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 450 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 410 |
| IRS990ScheduleA/OtherIncome509Grp/TotalAmt | 0 | 6010 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.77750 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.79450 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 2503137 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 222852 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 101908 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 177402 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 107213 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt | 0 | 77224 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 686599 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt | 0 | 198852 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt | 0 | 81908 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 157060 |
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Displayed year
2017 • Form 990Detailed filing. Detailed filing data is available for this year.