Liabilities / Assets
62nd percentile
Higher debt load relative to assets than 62% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
62nd percentile
Higher debt load relative to assets than 62% of similar nonprofits.
Liabilities / Revenue
40th percentile
Higher debt load relative to revenue than 40% of similar nonprofits.
Net Margin
27th percentile
Higher net margin than 27% of similar nonprofits.
Top Officer Pay
86th percentile
Higher top officer pay than 86% of similar nonprofits.
Top officer pay equals 4.4% of source-year revenue.
Asset Growth
31st percentile
Faster asset growth than 31% of similar nonprofits.
Revenue Growth
54th percentile
Faster revenue growth than 54% of similar nonprofits.
Assets
Down$1,189,128
Down $22,316 (-1.8%) from 2016
Net Assets
Down$961,432
Down $90,996 (-8.6%) from 2016
Liabilities
Up$227,696
Up $68,680 (+43%) from 2016
Revenue
Up$3,783,379
Up $217,737 (+6.1%) from 2016
Expenses
Up$3,986,746
Up $573,390 (+17%) from 2016
Net Income
Down-$203,367
Down $355,653 (-234%) from 2016
To create greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.
To create greater public awareness for rare diseases, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $1,028,392 | $987,903 | ▼ $40,489 |
| Prepaid Expenses and Deferred Charges | $115,994 | $144,017 | ▲ $28,023 |
| Accounts Receivable | $0 | $22,119 | ▲ $22,119 |
| Land, Buildings, and Equipment, Net | $39,526 | $13,241 | ▼ $26,285 |
| Inventories for Sale or Use | $17,545 | $11,861 | ▼ $5,684 |
| Total Assets | $1,211,444 | $1,189,128 | ▼ $22,316 |
| Other Assets Total | $9,987 | $9,987 | → $0 |
| Liabilities | |||
| Other Liabilities | $83,904 | $152,757 | ▲ $68,853 |
| Accounts Payable and Accrued Expenses | $67,854 | $74,939 | ▲ $7,085 |
| Unsecured Notes Loans Payable | $7,258 | $0 | ▼ $7,258 |
| Total Liabilities | $159,016 | $227,696 | ▲ $68,680 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $607,983 | $680,932 | ▲ $72,949 |
| Temporarily Rstr Net Assets | $444,445 | $280,500 | ▼ $163,945 |
| Total Net Assets Fund Balance | $1,052,428 | $961,432 | ▼ $90,996 |
| Total Liabilities and Net Assets / Fund Balance | $1,211,444 | $1,189,128 | ▼ $22,316 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Other Land Buildings | $3,623 | $81,006 | $84,629 |
| Buildings | $9,618 | $696 | $10,314 |
| Period | Beginning | Contrib. | Gain/Loss | Other Uses | End |
|---|---|---|---|---|---|
| 2017 | $444,445 | $340,911 | - | $392,669 | $280,500 |
| 2016 | $226,912 | $217,533 | - | - | $444,445 |
| 2015 | $165,361 | $61,551 | - | - | $226,912 |
| 2014 | $107,722 | $57,639 | - | - | $165,361 |
| 2013 | - | $107,722 | - | - | $107,722 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Nicole Boice | Founder | FT | $168,000 | $168,000 |
| Angie Rowe | Interim Executive Director | FT | $137,469 | $137,469 |
| Tiffany Leite | Chief Program Officer | FT | $76,333 | $76,333 |
| Name | Title |
|---|---|
| Wendy White | Chair |
| Natalie Douglas | Vice Chair |
| Brad Margus | Director |
| Caroline Loewy | Director |
| Craig Martin | Director |
| Hugh Hempel | Director |
| John Crowley | Director |
| Nauman Shah | Director |
| Peter Pellizzon | Director |
| Susan Stein | Director |
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| Kevin Rohrbach | Engagement Consultant | 28 ARGONAUT SUITE 150, Aliso Viejo, CA 92656 | $118,750 |
| Contribution Type | Reported Amount | Valuation Method |
|---|---|---|
| Other Non Cash Contri Table | $14,700 | Fair Market Value |
| Other Non Cash Contri Table | $11,889 | Fair Market Value |
| Total Noncash Contributions | $26,589 | - |
| Line Item | Amount |
|---|---|
| Other Expenses | $2,408,104 |
| Salaries, Compensation, and Employee Benefits | $1,428,088 |
| Total Fundraising Expense | $263,590 |
| Grants and Similar Amounts Paid | $150,554 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Other Salaries and Wages | $617,208 | $177,056 | $150,451 | $944,715 |
| Conferences and Meetings | $615,513 | $7,463 | - | $622,976 |
| Current Officers, Directors, Trustees, and Key Employees | $280,519 | $67,970 | $33,313 | $381,802 |
| Fees for Services Other | $231,087 | $19,703 | $17,000 | $267,790 |
| All Other Expenses | $183,209 | $49,338 | $18,046 | $250,593 |
| Travel | $130,304 | $16,225 | $11,222 | $157,751 |
| Grants to Domestic Orgs | $119,087 | - | - | $119,087 |
| Occupancy | $83,766 | $17,595 | $12,784 | $114,145 |
| Payroll Taxes | $75,163 | $14,220 | $12,188 | $101,571 |
| Advertising | $77,308 | $2,420 | $1,888 | $81,616 |
| Information Technology | $55,709 | $15,631 | $464 | $71,804 |
| Other Expenses | $48,505 | $13,735 | $2,734 | $64,974 |
| Fees for Services Accounting | - | $53,932 | - | $53,932 |
| Grants to Domestic Individuals | $31,467 | - | - | $31,467 |
| Depreciation Depletion | - | $23,677 | - | $23,677 |
| Insurance | - | $11,669 | - | $11,669 |
| Fees for Services Legal | $5,213 | $1,985 | $3,500 | $10,698 |
| Total Functional Expenses | $3,166,234 | $556,922 | $263,590 | $3,986,746 |
| Line Item | Amount |
|---|---|
| Total Expenses per Audited Statements | $3,989,354 |
| Total Expenses per Form 990 | $3,986,746 |
| Expenses per Audited Statements | $3,963,069 |
| Expenses Not Reported on Form 990 | $26,285 |
| Expenses Not Reported on Financial Statements | $23,677 |
| Other Expense Adjustments | $23,677 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Alport Syndrome Foundation | Scottsdale, AZ | 501(c)(3) | To Create Greater Public Awareness | $15,000 |
| The Global Fnd for Peroxisomal Disorders | Tulsa, OK | 501(c)(3) | To Create Greater Public Awareness | $15,000 |
| Cure Sanfilippo Foundation | Columbia, SC | 501(c)(3) | To Create Greater Public Awareness | $14,500 |
| Angioma Alliance | Norfolk, VA | 501(c)(3) | To Create Greater Public Awareness | $10,800 |
| Bohring-opitz Syndrome Foundation Inc | Gainesville, FL | 501(c)(3) | To Create Greater Public Awareness | $5,000 |
| Cfc International | Vestal, NY | 501(c)(3) | To Create Greater Public Awareness | $5,000 |
| Cure Duchenne | Newport Beach, CA | 501(c)(3) | To Create Greater Public Awareness | $5,000 |
| Pkd Foundation | Kansas City, MO | 501(c)(3) | To Create Greater Public Awareness | $5,000 |
| The Brain Recovery Project | Los Angeles, CA | 501(c)(3) | To Create Greater Public Awareness | $5,000 |
| The Marfan Foundation | Port Washington, NY | 501(c)(3) | To Create Greater Public Awareness | $5,000 |
| Line Item | Amount |
|---|---|
| Fundraising Gross Income | $531,086 |
| Fundraising Direct Expenses | $293,927 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Fundraising | $531,086 | $531,086 | $293,927 | $237,159 |
| Total Events | $531,086 | $531,086 | $293,927 | $237,159 |
| Liability | Amount |
|---|---|
| Payroll Liabilities | $96,162 |
| Credit Card Payable | $56,488 |
| Sales Tax Payable | $107 |
“The organization provides a copy of form 990 to the governing body before the form is filed.”
“The organization makes its governing documents and financial statements available to the public upon request.”
“Supplies: program service expenses 31,199. Management and general expenses 27,359. Fundraising expenses 256. Total expenses 58,814. Printing and reproduction: program service expenses 50,659. Management and general expenses 1,751. Fundraising expenses 826. Total expenses 53,236. Promotional products: program service expenses 32,546. Management and general expenses 0. Fundraising expenses 0. Total expenses 32,546. Utilities: program service expenses 17,047. Management and general expenses 3,969. Fundraising expenses 3,117. Total expenses 24,133. Postage & shipping: program service expenses 10,497. Management and general expenses 3,361. Fundraising expenses 593. Total expenses 14,451. Undiagnosed patient program: program service expenses 11,169. Management and general expenses 0. Fundraising expenses 0. Total expenses 11,169. Donations: program service expenses 10,899. Management and general expenses 0. Fundraising expenses 0. Total expenses 10,899. Dues & subscriptions: program service expenses 5,771. Management and general expenses 225. Fundraising expenses 4,690. Total expenses 10,686. Repairs & maintenance: program service expenses 0. Management and general expenses 10,238. Fundraising expenses 0. Total expenses 10,238. Workers compensation: program service expenses 7,422. Management and general expenses 1,404. Fundraising expenses 1,204. Total expenses 10,030. Business registration fees: program service expenses 0. Management and general expenses 0. Fundraising expenses 7,360. Total expenses 7,360. Advocacy: program service expenses 6,000. Management and general expenses 0. Fundraising expenses 0. Total expenses 6,000. Bank fees: program service expenses 0. Management and general expenses 1,031. Fundraising expenses 0. Total expenses 1,031.”
“Depreciation on book and not on return -2,608.”
“The organization did not change either its oversight process or selection process during the tax year.”
“The organization does not believe there are any material uncertain tax positions and, accordingly, it has not recognized any liability for unrecognized tax benefits or any related interest or penalties.”
“BOOK DEPRECIATION”
“TAX DEPRECIATION”
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 | 67854 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 74939 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 0 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 22119 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | TO CREATE GREATER PUBLIC AWARENESS FOR RARE DISEASES, WHILE CONNECTING, EDUCATING AND EMPOWERING THE MILLIONS OF FAMILIES AND CAREGIVERS AFFECTED, THROUGH AN ONLINE COMMUNITY AND COLLABORATIVE PORTAL. |
| IRS990/AdvertisingGrp/FundraisingAmt | 0 | 1888 |
| IRS990/AdvertisingGrp/ManagementAndGeneralAmt | 0 | 2420 |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 77308 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 81616 |
| IRS990/AllOtherContributionsAmt | 0 | 3545874 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 18046 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 49338 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 183209 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 250593 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/AuditCommitteeInd | 0 | 1 |
| IRS990/BackupWthldComplianceInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | FOHRMAN & FOHRMAN INC |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 9494580836 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 23232 PERALTA SUITE 222 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | LAGUNA HILLS |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | CA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 92653 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOfficerEntInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 1028392 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 987903 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 33313 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 67970 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 280519 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 381802 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 0 |
| IRS990/CompensationProcessOtherInd | 0 | 0 |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 7463 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 615513 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 622976 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 0 | 118750 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 0 | 28 ARGONAUT SUITE 150 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 0 | ALISO VIEJO |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 0 | CA |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 0 | 92656 |
| IRS990/ContractorCompensationGrp/ContractorName/PersonNm | 0 | KEVIN ROHRBACH |
| IRS990/ContractorCompensationGrp/ServicesDesc | 0 | ENGAGEMENT CONSULTANT |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 3545874 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 150554 |
| IRS990/CYInvestmentIncomeAmt | 0 | 346 |
| IRS990/CYOtherExpensesAmt | 0 | 2408104 |
| IRS990/CYOtherRevenueAmt | 0 | 237159 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | -203367 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 1428088 |
| IRS990/CYTotalExpensesAmt | 0 | 3986746 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 263590 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 3783379 |
| IRS990/DAFExcessBusinessHoldingsInd | 0 | 0 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 1 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 23677 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 23677 |
| IRS990/Desc | 0 | CREATE PUBLIC AWARENESS FOR RARE DISEASE AND CONNECT, EDUCATE, AND EMPOWER FAMILIES AND CAREGIVERS AFFECTED |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DistributionToDonorInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 20 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/EscrowAccountInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 3166234 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 53932 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 53932 |
| IRS990/FeesForServicesLegalGrp/FundraisingAmt | 0 | 3500 |
| IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt | 0 | 1985 |
| IRS990/FeesForServicesLegalGrp/ProgramServicesAmt | 0 | 5213 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 10698 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 17000 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 19703 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 231087 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 267790 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form1098CFiledInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form8899Filedind | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 50.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 50.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 50.00 |
| 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/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | 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/PersonNm | 0 | CAROLINE LOEWY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | JOHN CROWLEY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | NICOLE BOICE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | NATALIE DOUGLAS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | HUGH HEMPEL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | PETER PELLIZZON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | BRAD MARGUS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | WENDY WHITE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | SUSAN STEIN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | NAUMAN SHAH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | CRAIG MARTIN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | ANGIE ROWE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | TIFFANY LEITE |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 168000 |
| 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 | 137469 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 76333 |
| 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/TitleTxt | 0 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | FOUNDER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | INTERIM EXECUTIVE DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | CHIEF PROGRAM OFFICER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 2008 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | 1 |
| IRS990/FundraisingActivitiesInd | 0 | 1 |
| IRS990/FundraisingDirectExpensesAmt | 0 | 293927 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 531086 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 11 |
| IRS990/GrantAmt | 0 | 150554 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 31467 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 31467 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 119087 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 119087 |
| IRS990/GrantsToIndividualsInd | 0 | 1 |
| IRS990/GrantsToOrganizationsInd | 0 | 1 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossReceiptsAmt | 0 | 4077306 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 1 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 11 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 2 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 464 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 15631 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 55709 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 71804 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 11669 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 11669 |
| IRS990/InventoriesForSaleOrUseGrp/BOYAmt | 0 | 17545 |
| IRS990/InventoriesForSaleOrUseGrp/EOYAmt | 0 | 11861 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 346 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 346 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/InvestTaxExemptBondsInd | 0 | 0 |
| IRS990/IRPDocumentCnt | 0 | 26 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 81702 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 39526 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 13241 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 94943 |
| IRS990/LegalDomicileStateCd | 0 | CA |
| IRS990/LicensedMoreThanOneStateInd | 0 | 0 |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 0 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | TO CREATE GREATER PUBLIC AWARENESS FOR RARE DISEASE, WHILE CONNECTING, EDUCATING AND EMPOWERING THE MILLIONS OF FAMILIES AND CAREGIVERS AFFECTED, THROUGH AN ONLINE COMMUNITY AND COLLABORATIVE PORTAL. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 1052428 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 961432 |
| IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt | 0 | 237159 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | 237159 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NoncashContributionsAmt | 0 | 26589 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 12784 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 17595 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 83766 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 114145 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OnBehalfOfIssuerInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OrgFiledInLieuOfForm1041Ind | 0 | 0 |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 9987 |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 9987 |
| IRS990/OtherChangesInNetAssetsAmt | 0 | -2608 |
| IRS990/OtherExpensesGrp/Desc | 0 | FUNDED TRAVEL FOR PATIE |
| IRS990/OtherExpensesGrp/Desc | 1 | PATIENT SERVICES |
| IRS990/OtherExpensesGrp/Desc | 2 | FEES |
| IRS990/OtherExpensesGrp/Desc | 3 | MEALS & ENTERTAINMENT |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 2734 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 3900 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 60403 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 13735 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 420624 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 178191 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 13361 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 48505 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 420624 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 182091 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 73764 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 64974 |
| IRS990/OtherLiabilitiesGrp/BOYAmt | 0 | 83904 |
| IRS990/OtherLiabilitiesGrp/EOYAmt | 0 | 152757 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 150451 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 177056 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 617208 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 944715 |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 12188 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 14220 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 75163 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 101571 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 115994 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 144017 |
| IRS990/PrincipalOfficerNm | 0 | ANGIE ROWE |
| IRS990/PriorPeriodAdjustmentsAmt | 0 | 114979 |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 3106963 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 97694 |
| IRS990/PYInvestmentIncomeAmt | 0 | -182 |
| IRS990/PYOtherExpensesAmt | 0 | 2035219 |
| IRS990/PYOtherRevenueAmt | 0 | 458861 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 152286 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 1280443 |
| IRS990/PYTotalExpensesAmt | 0 | 3413356 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 3565642 |
| IRS990/QuidProQuoContributionsInd | 0 | 0 |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | -203367 |
| IRS990/RegularMonitoringEnfrcInd | 0 | 0 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 0 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 1 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 1 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 4076960 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 3892521 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 3585077 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 1147373 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 582784 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 13284715 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 993761 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 541925 |
| IRS990ScheduleA/OtherIncome170Grp/TotalAmt | 0 | 1535686 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.89640 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.85970 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 13284715 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 4076960 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 3892521 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 3585077 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 1147373 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 582784 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 13284715 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 14820401 |
| IRS990/ScheduleBRequiredInd | 0 | 1 |
| IRS990ScheduleD/BuildingsGrp/BookValueAmt | 0 | 9618 |
| IRS990ScheduleD/BuildingsGrp/DepreciationAmt | 0 | 696 |
| IRS990ScheduleD/BuildingsGrp/OtherCostOrOtherBasisAmt | 0 | 10314 |
| IRS990ScheduleD/CYEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 444445 |
| IRS990ScheduleD/CYEndwmtFundGrp/ContributionsAmt | 0 | 340911 |
| IRS990ScheduleD/CYEndwmtFundGrp/EndYearBalanceAmt | 0 | 280500 |
| IRS990ScheduleD/CYEndwmtFundGrp/GrantsOrScholarshipsAmt | 0 | 112187 |
| IRS990ScheduleD/CYEndwmtFundGrp/OtherExpendituresAmt | 0 | 392669 |
| IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 226912 |
| IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/ContributionsAmt | 0 | 217533 |
| IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/EndYearBalanceAmt | 0 | 444445 |
| IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 165361 |
| IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/ContributionsAmt | 0 | 61551 |
| IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/EndYearBalanceAmt | 0 | 226912 |
| IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 107722 |
| IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/ContributionsAmt | 0 | 57639 |
| IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/EndYearBalanceAmt | 0 | 165361 |
| IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/ContributionsAmt | 0 | 107722 |
| IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/EndYearBalanceAmt | 0 | 107722 |
| IRS990ScheduleD/EndowmentsHeldRelatedOrgInd | 0 | 0 |
| IRS990ScheduleD/EndowmentsHeldUnrelatedOrgInd | 0 | 0 |
| IRS990ScheduleD/ExpensesNotReportedAmt | 0 | 26285 |
| IRS990ScheduleD/ExpensesNotRptFinclStmtAmt | 0 | 23677 |
| IRS990ScheduleD/ExpensesSubtotalAmt | 0 | 3963069 |
| IRS990ScheduleD/FootnoteTextInd | 0 | X |
| IRS990ScheduleD/OtherExpensesIncludedAmt | 0 | 26285 |
| IRS990ScheduleD/OtherExpensesNotIncludedAmt | 0 | 23677 |
| IRS990ScheduleD/OtherLandBuildingsGrp/BookValueAmt | 0 | 3623 |
| IRS990ScheduleD/OtherLandBuildingsGrp/DepreciationAmt | 0 | 81006 |
| IRS990ScheduleD/OtherLandBuildingsGrp/OtherCostOrOtherBasisAmt | 0 | 84629 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt | 0 | 56488 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt | 1 | 96162 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt | 2 | 107 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | CREDIT CARD PAYABLE |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 1 | PAYROLL LIABILITIES |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 2 | SALES TAX PAYABLE |
| IRS990ScheduleD/RevenueNotReportedAmt | 0 | 0 |
| IRS990ScheduleD/RevenueNotReportedFinclStmtAmt | 0 | 0 |
| IRS990ScheduleD/RevenueSubtotalAmt | 0 | 3783379 |
| IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt | 0 | THE ORGANIZATION DOES NOT BELIEVE THERE ARE ANY MATERIAL UNCERTAIN TAX POSITIONS AND, ACCORDINGLY, IT HAS NOT RECOGNIZED ANY LIABILITY FOR UNRECOGNIZED TAX BENEFITS OR ANY RELATED INTEREST OR PENALTIES. |
| IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt | 1 | BOOK DEPRECIATION |
| IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt | 2 | TAX DEPRECIATION |
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Displayed year
2017 • Form 990Detailed filing. Detailed filing data is available for this year.