Liabilities / Assets
27th percentile
Tied with the lowest-debt nonprofits in its peer group.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
27th percentile
Tied with the lowest-debt nonprofits in its peer group.
Liabilities / Revenue
28th percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
92nd percentile
Higher net margin than 92% of similar nonprofits.
Top Officer Pay
50th percentile
Higher top officer pay than 50% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
89th percentile
Faster asset growth than 89% of similar nonprofits.
Revenue Growth
27th percentile
Faster revenue growth than 27% of similar nonprofits.
Assets
Up$932,447
Up $328,369 (+54%) from 2018
Net Assets
Up$932,447
Up $328,369 (+54%) from 2018
Liabilities
Flat$0
Flat from 2018
Revenue
Down$603,678
Down $49,002 (-7.5%) from 2018
Expenses
Up$275,309
Up $35,460 (+15%) from 2018
Net Income
Down$328,369
Down $84,462 (-20%) from 2018
To fund pioneering research and compassionately support the batten community. The organization works tirelessly to give children with batten disease the best possible life, to spread awareness of the urgency to fund new treatments, and to help all families affected by batten disease.
This organization is organized exclusively for educational and charitable purposes, including to educate the public about and to obtain funding for research to cure rare diseases, including specifically juvenile batten disease.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $604,078 | $932,447 | ▲ $328,369 |
| Rtn Earn Endowment Incm Other Fnds | $604,078 | $932,447 | ▲ $328,369 |
| Pd in Cap Srpls Land Bldg Eqp Fund | $0 | $0 | → $0 |
| Cap Stk Tr Prin Current Funds | $0 | $0 | → $0 |
| Total Assets | $604,078 | $932,447 | ▲ $328,369 |
| Liabilities | |||
| Total Liabilities | $0 | $0 | → $0 |
| Net Assets / Fund Balance | |||
| Total Net Assets Fund Balance | $604,078 | $932,447 | ▲ $328,369 |
| Total Liabilities and Net Assets / Fund Balance | $604,078 | $932,447 | ▲ $328,369 |
| Name | Title |
|---|---|
| Karen Kahn | President/CEO |
| David Kahn | Director |
| Jennifer Mcginn | Director |
| Kathryn Niederer | Director |
| Chad Mcginn | CFO/treasurer |
| Marlena Kahn | Secretary |
| Contribution Type | Contribution Count | Reported Amount | Valuation Method |
|---|---|---|---|
| Other Non Cash Contri Table | 112 | $275,375 | Auction Price |
| Other Non Cash Contri Table | 19 | $29,321 | Auction Price |
| Food Inventory | 11 | $20,143 | Auction Price |
| Works of Art | 2 | $3,850 | Auction Price |
| Collectibles | 5 | $3,306 | Auction Price |
| Clothing and Household Goods | - | $675 | Auction Price |
| Total Noncash Contributions | 149 | $332,670 | - |
| Line Item | Amount |
|---|---|
| Grants and Similar Amounts Paid | $259,704 |
| Other Expenses | $15,605 |
| Professional Fundraising Fees | $0 |
| Salaries, Compensation, and Employee Benefits | $0 |
| Total Fundraising Expense | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Grants to Domestic Orgs | $259,704 | - | - | $259,704 |
| Travel | - | $8,894 | - | $8,894 |
| Fees for Services Legal | - | $2,293 | - | $2,293 |
| Information Technology | - | $2,052 | - | $2,052 |
| Office Expenses | - | $454 | - | $454 |
| Insurance | - | $45 | - | $45 |
| Other Expenses | - | $10 | - | $10 |
| Total Functional Expenses | $259,704 | $15,605 | $0 | $275,309 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Rosalind Franklin University of Medicine & Science | Chicago, IL | - | To Fund Research of Advancing Knowledge and Creating Knowledge That Can Be Translated Into Improving the Health of the Population | $154,008 |
| Sanford Research | Sioux Falls, SD | - | To Support and Promote the Pursuit of the Highest Caliber, Publishable Research (1) Relating to the Development/delivery of Quality Medical and Health Care Services, (2) Advancing Medical or Scientific Knowledge and Skills, And/or (3) Benefiting the Education of Health Science Students, Residents, Health Professionals and the General Public | $62,571 |
| Bdsra | Columbus, OH | - | To Fund Research for a Cure for and to Promote Awareness of Batten Disease. | $36,000 |
| Our Promise to Nick Foundation | Bedford, NH | - | To Fund Research for a Cure for and to Promote Awareness of Batten Disease. | $5,500 |
| Grayhawk Pto | Scottsdale, AZ | - | To Fund Programs Such as Stem, Building and Playground Improvements, Core Knowledge Activities, Field Trips, Classroom Supplies, Technology, Art Masterpiece, Teacher Training and Assemblies, Etc. | $1,500 |
| Global Genes | Aliso Viejo, CA | - | Connect, Empower, and Inspire the Rare Disease Community | $125 |
| Line Item | Amount |
|---|---|
| Fundraising Direct Expenses | $341,522 |
| Fundraising Gross Income | $267,372 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Golf Fundraiser | $675,440 | $267,372 | $269,502 | $-2,130 |
| Total Events | $675,440 | $267,372 | $341,522 | $-74,150 |
“David kahn, director karen kahn, president family marlena kahn, secretary david kahn, director jennifer mcginn, director family chad mcginn, cfo jennifer mcginn, director family kathryn niederer, director karen kahn, president family”
“The organization has one class of members who have the right to elect the board of directors of the organization. The members have no right to receive any share of the organization's profits or net assets upon the organization's dissolution.”
“The organization has one class of members who have the right to elect the board of directors of the organizaion.”
“The organization had no committees.”
“The organization's return preparer (an outside accounting firm) emails form 990 to the organization's president/chief operating officer, who reviews and emails the form 990 to each director and officer of the organization for review before filing.”
“The organization periodically reviews (a) whether compensation arrangements and benefits (if any) are reasonable, based on competent survey information, and are the result of arm's length bargaining; and (b) whether partnerships, joint ventures, and arrangements with management organizations (if any) conform to the organization's written policies, are properly recorded, reflect reasonable investment or payments for goods and services, further charitable purposes and do not result in inurement, impermissible private benefit or in an excess benefit transaction. No such arrangements exist as of the filing of this form 990. Additionally, each director and officer of the organization is required to annually sign a statement which affirm that such person (a) has received a copy of the conflicts of interest policy; (b) has read and understands the policy; (c) has agreed to comply with the policy; and (d) understands the organization is charitable and in order to maintain its federal tax exemption it must engage primarily in activities which accomplish one or more of its tax-exempt purposes.”
“The organization does not provide any compensation. However, to the extent any such compensation is paid in the future, the organization will periodically review whether such compensation arrangements and benefits are reasonable, based on competent survey information, and are the result of arm's length bargaining.”
“The organization makes its governing documents, conflict of interest policy and financial statements available to the public upon request.”
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/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | THIS ORGANIZATION IS ORGANIZED EXCLUSIVELY FOR EDUCATIONAL AND CHARITABLE PURPOSES, INCLUDING TO EDUCATE THE PUBLIC ABOUT AND TO OBTAIN FUNDING FOR RESEARCH TO CURE RARE DISEASES, INCLUDING SPECIFICALLY JUVENILE BATTEN DISEASE. |
| IRS990/AllOtherContributionsAmt | 0 | 267372 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | KAREN KAHN |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 4407086008 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 7433 E JOURNEY LN |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | SCOTTSDALE |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | AZ |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 85255 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | 0 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CapStkTrPrinCurrentFundsGrp/BOYAmt | 0 | 0 |
| IRS990/CapStkTrPrinCurrentFundsGrp/EOYAmt | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 604078 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 932447 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 0 |
| IRS990/CompensationProcessOtherInd | 0 | 0 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContriRptFundraisingEventAmt | 0 | 408068 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 675440 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 259704 |
| IRS990/CYInvestmentIncomeAmt | 0 | 2388 |
| IRS990/CYOtherExpensesAmt | 0 | 15605 |
| IRS990/CYOtherRevenueAmt | 0 | -74150 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 328369 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/CYTotalExpensesAmt | 0 | 275309 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 0 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 603678 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 1 |
| IRS990/DeductibleNonCashContriInd | 0 | 1 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/Desc | 0 | THIS ORGANIZATION MADE GRANTS TO SEVERAL TAX-EXEMPT 501(C)(3) ORGANIZATIONS THAT ADVANCE THE OBJECTIVES OF THIS ORGANIZATION TO PROMOTE AWARENESS OF BATTEN DISEASE AS WELL AS TO PROMOTE OPPORTUNITIES FOR SCIENTISTS TO COME TOGETHER TO CREATE AND FUND INNOVATIVE RESEARCH PROPOSALS TO WORK TOWARD A CURE FOR BATTEN DISEASE. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 0 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 1 |
| IRS990/EmployeeCnt | 0 | 0 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 259704 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 1 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt | 0 | 2293 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 2293 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 7.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | 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/PersonNm | 0 | DAVID KAHN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | KAREN KAHN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | KATHRYN NIEDERER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | JENNIFER MCGINN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | MARLENA KAHN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | CHAD MCGINN |
| 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/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/TitleTxt | 0 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | PRESIDENT/CEO |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | CFO/TREASURER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 2017 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedInd | 0 | 0 |
| IRS990/FundraisingActivitiesInd | 0 | 1 |
| IRS990/FundraisingAmt | 0 | 408068 |
| IRS990/FundraisingDirectExpensesAmt | 0 | 341522 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 267372 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 4 |
| IRS990/GrantAmt | 0 | 259704 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 259704 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 259704 |
| IRS990/GrantsToIndividualsInd | 0 | 0 |
| IRS990/GrantsToOrganizationsInd | 0 | 1 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossReceiptsAmt | 0 | 945200 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 0 |
| IRS990/IndependentVotingMemberCnt | 0 | 4 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIIIInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 2052 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 2052 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 45 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 45 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 2388 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 2388 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | AZ |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 1 |
| IRS990/MethodOfAccountingCashInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 0 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | TO FUND PIONEERING RESEARCH AND COMPASSIONATELY SUPPORT THE BATTEN COMMUNITY. THE ORGANIZATION WORKS TIRELESSLY TO GIVE CHILDREN WITH BATTEN DISEASE THE BEST POSSIBLE LIFE, TO SPREAD AWARENESS OF THE URGENCY TO FUND NEW TREATMENTS, AND TO HELP ALL FAMILIES AFFECTED BY BATTEN DISEASE. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 604078 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 932447 |
| IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt | 0 | -74150 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | -74150 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NoListedPersonsCompensatedInd | 0 | X |
| IRS990/NoncashContributionsAmt | 0 | 267372 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 454 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 454 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrgDoesNotFollowFASB117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | MEALS & ENTERTAINMENT |
| IRS990/OtherExpensesGrp/Desc | 1 | BANK FEE |
| IRS990/OtherExpensesGrp/Desc | 2 | SHIPPING & DELIVERY |
| IRS990/OtherExpensesGrp/Desc | 3 | TAX & LICENSE |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 1678 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 152 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 27 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 3 | 10 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 1678 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 152 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 27 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 10 |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PdInCapSrplsLandBldgEqpFundGrp/BOYAmt | 0 | 0 |
| IRS990/PdInCapSrplsLandBldgEqpFundGrp/EOYAmt | 0 | 0 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrincipalOfficerNm | 0 | KAREN KAHN |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | N/A |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | N/A |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 652461 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 210000 |
| IRS990/PYInvestmentIncomeAmt | 0 | 219 |
| IRS990/PYOtherExpensesAmt | 0 | 29849 |
| IRS990/PYOtherRevenueAmt | 0 | 0 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 412831 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/PYTotalExpensesAmt | 0 | 239849 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 652680 |
| IRS990/QuidProQuoContributionsInd | 0 | 1 |
| IRS990/QuidProQuoContriDisclInd | 0 | 1 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 328369 |
| IRS990/RegularMonitoringEnfrcInd | 0 | 1 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 0 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 0 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 0 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/RtnEarnEndowmentIncmOthFndsGrp/BOYAmt | 0 | 604078 |
| IRS990/RtnEarnEndowmentIncmOthFndsGrp/EOYAmt | 0 | 932447 |
| IRS990ScheduleA/First5Years170Ind | 0 | X |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 675440 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 652461 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 2500 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 1330401 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 2388 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 219 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 2607 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 1291375 |
| IRS990ScheduleA/SubstantialContributorsTotAmt | 0 | 39026 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 675440 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 652461 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 2500 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 1330401 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 1333008 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990/ScheduleBRequiredInd | 0 | 1 |
| IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt | 0 | 408068 |
| IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt | 0 | 408068 |
| IRS990ScheduleG/FundraisingEventInformationGrp/DirectExpenseSummaryEventsAmt | 0 | 341522 |
| IRS990ScheduleG/FundraisingEventInformationGrp/EntertainmentEvent1Amt | 0 | 53516 |
| IRS990ScheduleG/FundraisingEventInformationGrp/EntertainmentTotalEventsAmt | 0 | 53516 |
| IRS990ScheduleG/FundraisingEventInformationGrp/Event1Nm | 0 | GOLF FUNDRAISER |
| IRS990ScheduleG/FundraisingEventInformationGrp/FoodAndBeverageEvent1Amt | 0 | 0 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent1Amt | 0 | 675440 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsTotalAmt | 0 | 675440 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueEvent1Amt | 0 | 267372 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueTotalEventsAmt | 0 | 267372 |
| IRS990ScheduleG/FundraisingEventInformationGrp/NetIncomeSummaryAmt | 0 | -74150 |
| IRS990ScheduleG/FundraisingEventInformationGrp/OthDirectExpnssTotalEventsAmt | 0 | 269502 |
| IRS990ScheduleG/FundraisingEventInformationGrp/OtherDirectExpensesEvent1Amt | 0 | 269502 |
| IRS990ScheduleG/FundraisingEventInformationGrp/RentFacilityCostsEvent1Amt | 0 | 18504 |
| IRS990ScheduleG/FundraisingEventInformationGrp/RentFcltyCostsTotalEventsAmt | 0 | 18504 |
| IRS990ScheduleI/GrantRecordsMaintainedInd | 0 | 1 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 0 | 5500 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 1 | 154008 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 2 | 125 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 3 | 62571 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 4 | 36000 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 5 | 1500 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | TO FUND RESEARCH FOR A CURE FOR AND TO PROMOTE AWARENESS OF BATTEN DISEASE. |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 1 | TO FUND RESEARCH OF ADVANCING KNOWLEDGE AND CREATING KNOWLEDGE THAT CAN BE TRANSLATED INTO IMPROVING THE HEALTH OF THE POPULATION |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 2 | CONNECT, EMPOWER, AND INSPIRE THE RARE DISEASE COMMUNITY |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 3 | TO SUPPORT AND PROMOTE THE PURSUIT OF THE HIGHEST CALIBER, PUBLISHABLE RESEARCH (1) RELATING TO THE DEVELOPMENT/DELIVERY OF QUALITY MEDICAL AND HEALTH CARE SERVICES, (2) ADVANCING MEDICAL OR SCIENTIFIC KNOWLEDGE AND SKILLS, AND/OR (3) BENEFITING THE EDUCATION OF HEALTH SCIENCE STUDENTS, RESIDENTS, HEALTH PROFESSIONALS AND THE GENERAL PUBLIC |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 4 | TO FUND RESEARCH FOR A CURE FOR AND TO PROMOTE AWARENESS OF BATTEN DISEASE. |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 5 | TO FUND PROGRAMS SUCH AS STEM, BUILDING AND PLAYGROUND IMPROVEMENTS, CORE KNOWLEDGE ACTIVITIES, FIELD TRIPS, CLASSROOM SUPPLIES, TECHNOLOGY, ART MASTERPIECE, TEACHER TRAINING AND ASSEMBLIES, ETC. |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 0 | OUR PROMISE TO NICK FOUNDATION |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 1 | ROSALIND FRANKLIN UNIVERSITY OF MEDICINE & SCIENCE |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 2 | GLOBAL GENES |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 3 | SANFORD RESEARCH |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 4 | BDSRA |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 5 | GRAYHAWK PTO |
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| IRS990ScheduleI/RecipientTable/RecipientEIN | 1 | 362181973 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 2 | 263331487 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 3 | 460450378 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 4 | 911397792 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 5 | 860914038 |
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| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 1 | 3333 GREEN BAY ROAD |
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| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 3 | 2301 E 60TH ST N |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 4 | 2780 AIRPORT DRIVE SUITE 342 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 5 | 7525 E GRAYHAWK DR |
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| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 1 | CHICAGO |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 2 | ALISO VIEJO |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 3 | SIOUX FALLS |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 4 | COLUMBUS |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 5 | SCOTTSDALE |
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| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 1 | IL |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 2 | CA |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 3 | SD |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 4 | OH |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 5 | AZ |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 0 | 03110 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 1 | 60064 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 2 | 92656 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 3 | 57104 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 4 | 43219 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 5 | 85255 |
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| IRS990ScheduleM/CollectiblesGrp/NoncashContributionsRptF990Amt | 0 | 3306 |
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| IRS990ScheduleM/FoodInventoryGrp/MethodOfDeterminingRevenuesTxt | 0 | AUCTION PRICE |
| IRS990ScheduleM/FoodInventoryGrp/NonCashCheckboxInd | 0 | X |
| IRS990ScheduleM/FoodInventoryGrp/NoncashContributionsRptF990Amt | 0 | 20143 |
| IRS990ScheduleM/OtherNonCashContriTableGrp/ContributionCnt | 0 | 112 |
| IRS990ScheduleM/OtherNonCashContriTableGrp/ContributionCnt | 1 | 19 |
| IRS990ScheduleM/OtherNonCashContriTableGrp/Desc | 0 | ACTIVITIES |
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| IRS990ScheduleM/OtherNonCashContriTableGrp/NonCashCheckboxInd | 1 | X |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | DAVID KAHN, DIRECTOR KAREN KAHN, PRESIDENT FAMILY MARLENA KAHN, SECRETARY DAVID KAHN, DIRECTOR JENNIFER MCGINN, DIRECTOR FAMILY CHAD MCGINN, CFO JENNIFER MCGINN, DIRECTOR FAMILY KATHRYN NIEDERER, DIRECTOR KAREN KAHN, PRESIDENT FAMILY |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | THE ORGANIZATION HAS ONE CLASS OF MEMBERS WHO HAVE THE RIGHT TO ELECT THE BOARD OF DIRECTORS OF THE ORGANIZATION. THE MEMBERS HAVE NO RIGHT TO RECEIVE ANY SHARE OF THE ORGANIZATION'S PROFITS OR NET ASSETS UPON THE ORGANIZATION'S DISSOLUTION. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | THE ORGANIZATION HAS ONE CLASS OF MEMBERS WHO HAVE THE RIGHT TO ELECT THE BOARD OF DIRECTORS OF THE ORGANIZAION. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | THE ORGANIZATION HAD NO COMMITTEES. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | THE ORGANIZATION'S RETURN PREPARER (AN OUTSIDE ACCOUNTING FIRM) EMAILS FORM 990 TO THE ORGANIZATION'S PRESIDENT/CHIEF OPERATING OFFICER, WHO REVIEWS AND EMAILS THE FORM 990 TO EACH DIRECTOR AND OFFICER OF THE ORGANIZATION FOR REVIEW BEFORE FILING. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | THE ORGANIZATION PERIODICALLY REVIEWS (A) WHETHER COMPENSATION ARRANGEMENTS AND BENEFITS (IF ANY) ARE REASONABLE, BASED ON COMPETENT SURVEY INFORMATION, AND ARE THE RESULT OF ARM'S LENGTH BARGAINING; AND (B) WHETHER PARTNERSHIPS, JOINT VENTURES, AND ARRANGEMENTS WITH MANAGEMENT ORGANIZATIONS (IF ANY) CONFORM TO THE ORGANIZATION'S WRITTEN POLICIES, ARE PROPERLY RECORDED, REFLECT REASONABLE INVESTMENT OR PAYMENTS FOR GOODS AND SERVICES, FURTHER CHARITABLE PURPOSES AND DO NOT RESULT IN INUREMENT, IMPERMISSIBLE PRIVATE BENEFIT OR IN AN EXCESS BENEFIT TRANSACTION. NO SUCH ARRANGEMENTS EXIST AS OF THE FILING OF THIS FORM 990. ADDITIONALLY, EACH DIRECTOR AND OFFICER OF THE ORGANIZATION IS REQUIRED TO ANNUALLY SIGN A STATEMENT WHICH AFFIRM THAT SUCH PERSON (A) HAS RECEIVED A COPY OF THE CONFLICTS OF INTEREST POLICY; (B) HAS READ AND UNDERSTANDS THE POLICY; (C) HAS AGREED TO COMPLY WITH THE POLICY; AND (D) UNDERSTANDS THE ORGANIZATION IS CHARITABLE AND IN ORDER TO MAINTAIN ITS FEDERAL TAX EXEMPTION IT MUST ENGAGE PRIMARILY IN ACTIVITIES WHICH ACCOMPLISH ONE OR MORE OF ITS TAX-EXEMPT PURPOSES. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | THE ORGANIZATION DOES NOT PROVIDE ANY COMPENSATION. HOWEVER, TO THE EXTENT ANY SUCH COMPENSATION IS PAID IN THE FUTURE, THE ORGANIZATION WILL PERIODICALLY REVIEW WHETHER SUCH COMPENSATION ARRANGEMENTS AND BENEFITS ARE REASONABLE, BASED ON COMPETENT SURVEY INFORMATION, AND ARE THE RESULT OF ARM'S LENGTH BARGAINING. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 7 | THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | FORM 990, PART VI, SECTION A, LINE 2 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | FORM 990, PART VI, SECTION A, LINE 6 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | FORM 990, PART VI, SECTION A, LINE 7A |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | FORM 990, PART VI, SECTION A, LINE 8B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | FORM 990, PART VI, SECTION B, LINE 11B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | FORM 990, PART VI, SECTION B, LINE 12C |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | FORM 990, PART VI, SECTION B, LINE 15 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 7 | FORM 990, PART VI, SECTION C, LINE 19 |
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| IRS990/SubjectToProxyTaxInd | 0 | 0 |
| IRS990/SubjToTaxRmnrtnExPrchtPymtInd | 0 | 0 |
| IRS990/TaxablePartyNotificationInd | 0 | 0 |
| IRS990/TaxExemptBondsInd | 0 | 0 |
| IRS990/TerminateOperationsInd | 0 | 0 |
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| IRS990/TotalAssetsEOYAmt | 0 | 932447 |
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| IRS990/TotalAssetsGrp/EOYAmt | 0 | 932447 |
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| IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt | 0 | 259704 |
| IRS990/TotalFunctionalExpensesGrp/TotalAmt | 0 | 275309 |
| IRS990/TotalGrossUBIAmt | 0 | 0 |
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| IRS990/TotalLiabilitiesEOYAmt | 0 | 0 |
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| IRS990/TotalRevenueGrp/TotalRevenueColumnAmt | 0 | 603678 |
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| IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt | 0 | 604078 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt | 0 | 932447 |
| IRS990/TotReportableCompRltdOrgAmt | 0 | 0 |
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| IRS990/TravelGrp/TotalAmt | 0 | 8894 |
| IRS990/TrnsfrExmptNonChrtblRltdOrgInd | 0 | 0 |
| IRS990/TypeOfOrganizationCorpInd | 0 | X |
| IRS990/UnrelatedBusIncmOverLimitInd | 0 | 0 |
| IRS990/UponRequestInd | 0 | X |
| IRS990/USAddress/AddressLine1Txt | 0 | 7433 E JOURNEY LN |
| IRS990/USAddress/CityNm | 0 | SCOTTSDALE |
| IRS990/USAddress/StateAbbreviationCd | 0 | AZ |
| IRS990/USAddress/ZIPCd | 0 | 85255 |
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Displayed year
2019 • Form 990Detailed filing. Detailed filing data is available for this year.