NATIONAL ATAXIA FOUNDATION INC: Form 990, tax year 2025
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL ATAXIA FOUNDATION INC (EIN 41-0832903)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-06-16
- IRS object ID
- 202631679349300238
- Schema version
- 2025v4.1
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2026-06-16T11:26:46-05:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 411397419 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Abdo LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 5201 Eden Ave Ste 250 | AddressLine1Txt |
| City | Edina | CityNm |
| State Abbreviation | MN | StateAbbreviationCd |
| ZIP | 55436 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2025-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 410832903 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | National Ataxia Foundation Incorporated | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 7635530020 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO Box 27986 | AddressLine1Txt |
| City | Minneapolis | CityNm |
| State Abbreviation | MN | StateAbbreviationCd |
| ZIP | 55427 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Andrew Rosen | PersonNm |
| Person Title | Chief Executive Officer | PersonTitleTxt |
| Phone | 7635530020 | PhoneNum |
| Signature | 2026-05-29 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Steven D AnsethCPA | PreparerPersonNm |
| PTIN | P00552219 | PTIN |
| Phone | 9528359090 | PhoneNum |
| Preparation | 2026-05-13 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2025 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Andrew Rosen | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO Box 27986 | AddressLine1Txt |
| City | Minneapolis | CityNm |
| State Abbreviation | MN | StateAbbreviationCd |
| ZIP | 55427 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $13,051,086 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | https://ataxia.org/ | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1957 | FormationYr |
| Legal Domicile State | MN | LegalDomicileStateCd |
| Activity Or Mission | To accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. | ActivityOrMissionDesc |
| Voting Members Governing Body | 14 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 14 | VotingMembersIndependentCnt |
| Total Employee | 23 | TotalEmployeeCnt |
| Total Volunteers | 350 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $5,859,791 | PYContributionsGrantsAmt |
| CY Contributions Grants | $10,976,320 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $1,025,514 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $1,811,861 | CYProgramServiceRevenueAmt |
| PY Investment Income | $96,230 | PYInvestmentIncomeAmt |
| CY Investment Income | $262,905 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$30,253 | PYOtherRevenueAmt |
| CY Other Revenue | -$19,024 | CYOtherRevenueAmt |
| PY Total Revenue | $6,951,282 | PYTotalRevenueAmt |
| CY Total Revenue | $13,032,062 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,436,737 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $2,459,416 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $2,005,553 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $2,252,333 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $609,726 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $1,832,835 | PYOtherExpensesAmt |
| CY Other Expenses | $1,407,893 | CYOtherExpensesAmt |
| PY Total Expenses | $6,275,125 | PYTotalExpensesAmt |
| CY Total Expenses | $6,119,642 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $676,157 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $6,912,420 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $4,791,426 | TotalAssetsBOYAmt |
| Total Assets EOY | $11,852,332 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $484,274 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $630,748 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $4,307,152 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $11,221,584 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | The National Ataxia Foundation's mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $1,262,194 | ExpenseAmt |
| Grant | $45,267 | GrantAmt |
| Revenue | $653,080 | RevenueAmt |
| Desc | Increased awareness about hereditary and sporadic ataxia disorders is promoted through a variety of education programs and materials for ataxia families, researchers, physicians, allied health professionals, government agencies, legislative officials and the general public. The Foundation publishes Generations, an annual newsletter and a monthly e-newsletter devoted to ataxia related articles including the latest research and other information beneficial to individuals with ataxia. The Foundation also offers several webinars throughout the year on current topics relevant to the ataxia community. Other educational materials, such as books, videos and fact sheets are provided to persons with ataxia, family members and health care professionals on a "direct request" basis through the NAF office. The Foundation's advocacy activities, such as Hill Days, serve to raise awareness about ataxia and policy issues impacting the ataxia community. The annual ataxia conference, and sponsorship and/or participation in national and international meetings, symposiums and seminars also serve to increase ataxia awareness.The National Ataxia Foundation attempts to locate people and families with hereditary and sporadic ataxia in order to provide them with information about ataxia. This is accomplished by providing updated information about ataxia to the general public by maintaining a website, social media channels, newsletters, and webinars. The Foundation assists individuals and families by identifying clinical resources and making appropriate referrals for neurological care, genetic counseling and gene testing. The Foundation also assists people with locating resources within their own communities, including support groups. The Foundation's network of support groups throughout the country provides families with access to in-person and virtual meeting opportunities. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $2,745,747 | ExpenseAmt |
| Grant | $1,887,973 | GrantAmt |
| Desc | NAF is committed to funding cutting-edge basic and translational research into hereditary and sporadic ataxia. The goals of NAF's research program are to further elucidate the disease mechanisms of ataxias, bring early-career clinicians and scientists into ataxia research, and help drive the field towards developing treatments and a cure for ataxia. Annual grants are selected through a competitive review process that includes NAF's Medical and Research Advisory Board members and over 80 leading ataxia scientists and clinicians, both domestic and international. Each year NAF awards grants to researchers from domestic and international non-profit and for-profit institutions that directly support basic and translational ataxia research through the following funding mechanisms:1. Pioneer SCA3 Translational Research Awards: Annually granted to outstanding research proposals that aim to make significant advancements in the development of treatments and/or improvements to patient care for Spinocerebellar Ataxia Type 3 (SCA3). Proposals may incorporate other forms of ataxia but must have a predominant focus on SCA3 translational or clinical research. 2. Seed Money Research Grant: Granted primarily as "seed monies" to assist investigators in the early or pilot phase of their studies and as additional support for ongoing investigations on demonstration of need. It is hoped that these studies will be further developed to attract future funding from other sources. 3. Post-doctoral Fellowship Award: Post-doctoral fellowship awards are to serve as a bridge from post-doctoral positions to junior faculty positions. Applicants should have completed at least one year of post-doctoral training, but not more than two at the time of application and should have shown a commitment to research in the field of ataxia. The award will permit individuals to spend an additional third year in a post-doctoral position and increase chances to establish an independent ataxia research program.4. Early Career Investigator Award: The Early Career Investigator Award was created to encourage early career clinical and scientific investigators to pursue a career in the field of ataxia research. 5. Pre-doctoral Fellowship to Promote Diversity in Ataxia Research: Merit-based award intended to enhance research and/or clinical training of promising graduate students from historically underrepresented backgrounds who are matriculated in pre-doctoral or clinical health professional degree training programs and who intend careers as scientists or other clinician-scientists within the field of ataxia. 6. National Ataxia Foundation Graduate Research Fellowship: The National Ataxia Foundation Graduate Research Fellowship is a competitive, non-renewable, merit-based award intended to encourage pre-doctoral students to pursue research and a career in the field of ataxia. 7. NAF Special Grants: Based on the emergent needs of the patient and research community, priority areas of ataxia research may be identified as eligible for specialized grant funding by NAF and may be awarded outside of the annual grant programs. One of these programs is the NAF Ataxia Brain Tissue Donation Program (In Memory of Carol Tate). NAF has partnered with the University of Maryland Brain and Tissue Bank (UMBTB) to relaunch the Ataxia Brain Tissue Donation Program. Brain tissue helps researchers advance our understanding of ataxia and to develop new therapies. NAF finacially supports brain donors from rural and remote communities to donate to the University of Maryland Brain and Tissue Bank. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $809,201 | ExpenseAmt |
| Grant | $526,176 | GrantAmt |
| Revenue | $1,158,781 | RevenueAmt |
| Desc | Funding for several of NAF's other key clinical research programs are provided through the NAF Drug Development Collaborative (DDC). The DDC is a pre-competitive pharmaceutical industry consortium with a principal goal of accelerating the development of treatments for ataxia. The Collaborative provides a centralized source for access to resources needed to support research and development of Ataxia therapies. Specific objectives of the Collaborative include natural history and bio sample data collection, development of biomarkers, validation of rating scales, clinical trial design, patient-reported outcomes, and other data necessary for the development and approval of safe and effective therapies. Two significant programs that are largely sponsored by the DDC include:1. No-cost Genetic Counseling and Testing Initiative: This program provides virtual genetic counseling and testing for individuals at-risk for three of the most common dominant ataxias to members at no-cost to participants. The aim of this program is to help individuals overcome barriers that have historically inhibited wide-spread genetic testing as well as support drug development through expanding the patient population eligible for future clinical trials.2. Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) Natural History Study: The CRC-SCA is one of the longest running and largest natural history studies of spinocerebellar ataxias (SCAs). A natural history study collects data that shows how a specific disease progresses in individuals over time. Natural history studies are essential for developing clinical trial designs that will facilitate drug development. There are over 300 patients enrolled at 16 CRC-SCA sites in the US and Canada. During annual visits, site investigators collect critical clinical data to aid in understanding disease progression and help guide future clinical trial design. Biofluids, such as plasma, serum, and cerebrospinal fluid, are also collected from patients and stored at the NINDS SCA-BRAC biorepository. Both deidentified clinical data and biofluids are available for request from non-participating investigators for approved research projects. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $4,817,142 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | 0 | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | Yes (1) | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 15 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 23 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 14 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 14 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | Yes (1) | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Andrew Rosen | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 7635530020 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO Box 27986 | AddressLine1Txt |
| City | Minneapolis | CityNm |
| State Abbreviation | MN | StateAbbreviationCd |
| ZIP | 55427 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (19 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| Jim Keene | |||||||
| President | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| David Brunnert | |||||||
| Vice President | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| David Spotts | |||||||
| Treasurer | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Linda Snider | |||||||
| Secretary | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Sandi Brettler | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Bryan Tabery | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Jason Gale | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Bryce Suchomel | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Mark Hazlin | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Serena Hung | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Hayley McLoughlin | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Michael Cammer | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Nick Kozauer | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Ann Riley | |||||||
| Board Member | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Andrew Rosen | |||||||
| Chief Executive Officer | 40.00 | Yes (X) | $194,042 | $0 | $27,705 | ||
| Kyle Billadeau | |||||||
| Vice President | 40.00 | $126,766 | $0 | $25,845 | Yes (X) | ||
| Lauren Moore | |||||||
| VP and Chief Scientific Of | 40.00 | $209,482 | $0 | $6,838 | Yes (X) | ||
| Joel Sutherland | |||||||
| Vice President Of Developm | 40.00 | $171,132 | $0 | $0 | Yes (X) | ||
| Richard McCutchen Jr | |||||||
| Regional Development Manager | 40.00 | $105,785 | $0 | $7,743 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $807,207 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $68,131 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 5 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $235,487 | FundraisingAmt |
| All Other Contributions | $10,740,833 | AllOtherContributionsAmt |
| Total Contributions | $10,976,320 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| Drug Development Collaborative | 900099 | $1,158,781 | $1,158,781 |
| Conference income | 900099 | $653,080 | $653,080 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $1,811,861 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $262,905 | TotalRevenueColumnAmt |
| Exclusion | $262,905 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $0 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $235,487 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $19,024 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$19,024 | TotalRevenueColumnAmt |
| Exclusion | -$19,024 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $13,032,062 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,811,861 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $243,881 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,884,315 | TotalAmt |
| Program Services | $1,884,315 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $575,101 | TotalAmt |
| Program Services | $575,101 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $221,746 | TotalAmt |
| Program Services | $150,921 | ProgramServicesAmt |
| Management And General | $23,666 | ManagementAndGeneralAmt |
| Fundraising | $47,159 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,741,806 | TotalAmt |
| Program Services | $1,194,610 | ProgramServicesAmt |
| Management And General | $179,169 | ManagementAndGeneralAmt |
| Fundraising | $368,027 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $58,226 | TotalAmt |
| Program Services | $38,777 | ProgramServicesAmt |
| Management And General | $6,841 | ManagementAndGeneralAmt |
| Fundraising | $12,608 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $84,072 | TotalAmt |
| Program Services | $55,989 | ProgramServicesAmt |
| Management And General | $9,878 | ManagementAndGeneralAmt |
| Fundraising | $18,205 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $146,483 | TotalAmt |
| Program Services | $101,707 | ProgramServicesAmt |
| Management And General | $14,016 | ManagementAndGeneralAmt |
| Fundraising | $30,760 | FundraisingAmt |
Fees For Services Management FeesForServicesManagementGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $39,710 | TotalAmt |
| Program Services | $30,582 | ProgramServicesAmt |
| Management And General | $2,478 | ManagementAndGeneralAmt |
| Fundraising | $6,650 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,017 | TotalAmt |
| Management And General | $16,017 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $18,826 | TotalAmt |
| Management And General | $18,826 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,109 | TotalAmt |
| Management And General | $6,109 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $136,748 | TotalAmt |
| Program Services | $71,091 | ProgramServicesAmt |
| Management And General | $59,400 | ManagementAndGeneralAmt |
| Fundraising | $6,257 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $342,345 | TotalAmt |
| Program Services | $179,397 | ProgramServicesAmt |
| Management And General | $150,626 | ManagementAndGeneralAmt |
| Fundraising | $12,322 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $104,341 | TotalAmt |
| Program Services | $18,571 | ProgramServicesAmt |
| Management And General | $76,238 | ManagementAndGeneralAmt |
| Fundraising | $9,532 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $68,332 | TotalAmt |
| Program Services | $13,179 | ProgramServicesAmt |
| Management And General | $50,157 | ManagementAndGeneralAmt |
| Fundraising | $4,996 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $56,407 | TotalAmt |
| Program Services | $28,203 | ProgramServicesAmt |
| Management And General | $17,460 | ManagementAndGeneralAmt |
| Fundraising | $10,744 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $597,680 | TotalAmt |
| Program Services | $472,945 | ProgramServicesAmt |
| Management And General | $43,156 | ManagementAndGeneralAmt |
| Fundraising | $81,579 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,886 | TotalAmt |
| Management And General | $15,712 | ManagementAndGeneralAmt |
| Fundraising | $174 | FundraisingAmt |
Other Expenses OtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Professional developmen | Desc |
| Total | $5,492 | TotalAmt |
| Program Services | $1,754 | ProgramServicesAmt |
| Management And General | $3,025 | ManagementAndGeneralAmt |
| Fundraising | $713 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,119,642 | TotalAmt |
| Program Services | $4,817,142 | ProgramServicesAmt |
| Management And General | $692,774 | ManagementAndGeneralAmt |
| Fundraising | $609,726 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $874,850 | BOYAmt |
| EOY | $1,282,222 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,063,290 | BOYAmt |
| EOY | $283,539 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,250 | BOYAmt |
| EOY | $218,000 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $171,717 | BOYAmt |
| EOY | $194,202 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,639,462 | BOYAmt |
| EOY | $7,774,369 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $2,100,000 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $24,857 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,791,426 | BOYAmt |
| EOY | $11,852,332 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $72,839 | BOYAmt |
| EOY | $103,457 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $311,876 | BOYAmt |
| EOY | $256,225 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $74,205 | BOYAmt |
| EOY | $271,066 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $25,354 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $484,274 | BOYAmt |
| EOY | $630,748 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,332,082 | BOYAmt |
| EOY | $9,352,981 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,975,070 | BOYAmt |
| EOY | $1,868,603 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,307,152 | BOYAmt |
| EOY | $11,221,584 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,791,426 | BOYAmt |
| EOY | $11,852,332 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $6,912,420 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $2,012 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,110,797 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,415,910 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,083,219 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,859,791 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $10,976,320 | CurrentTaxYearAmt |
| Total | $25,446,037 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,110,797 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,415,910 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,083,219 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,859,791 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $10,976,320 | CurrentTaxYearAmt |
| Total | $25,446,037 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $8,269,687 | SubstantialContributorsTotAmt |
| Public Support Total170 | $17,176,350 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $68,653 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $70,303 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $73,728 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $96,230 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $262,905 | CurrentTaxYearAmt |
| Total | $571,819 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $26,017,856 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $5,495,187 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.66020 | PublicSupportCY170Pct |
| Public Support PY170 | 0.79580 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Program related investment | Desc |
| Book Value | $2,100,000 | BookValueAmt |
| Method Valuation | C | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $2,100,000 | TotalBookValueProgramRltdAmt |
| Total Rev Etc Audited Fincl Stmt | $13,164,241 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $2,012 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $117,252 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $119,264 | RevenueNotReportedAmt |
| Revenue Subtotal | $13,044,977 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $6,109 | InvestmentExpensesNotIncldAmt |
| Other Revenues Not Included | -$19,024 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | -$12,915 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $13,032,062 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $6,249,809 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $117,252 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $19,024 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $136,276 | ExpensesNotReportedAmt |
| Expenses Subtotal | $6,113,533 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $6,109 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $6,109 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $6,119,642 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part XI, Line 4b - Other Adjustments: | Fundraising Expenses -19,024. |
| Part XII, Line 2d - Other Adjustments: | Fundraising Expenses 19,024. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, | 0 | 0 | Research grants to recipients in the region | Research Grants | $50,000 |
| Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium | 0 | 0 | Research grants to recipients in the region | Research Grants | $423,181 |
| North America - Canada and Mexico, but not the United States | 0 | 0 | Research grants to recipients in the region | Research Grants | $101,920 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $575,101 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $575,101 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (8 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| North America - Canada and Mexico, but not the United States | Research grants to recipients in the region | $31,550 | Transfer | $0 |
| Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium | Research grants to recipients in the region | $305,000 | Transfer | $0 |
| Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium | Research grants to recipients in the region | $18,181 | Transfer | $0 |
| North America - Canada and Mexico, but not the United States | Research grants to recipients in the region | $20,370 | Transfer | $0 |
| East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, | Research grants to recipients in the region | $50,000 | Transfer | $0 |
| North America - Canada and Mexico, but not the United States | Research grants to recipients in the region | $50,000 | Transfer | $0 |
| Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium | Research grants to recipients in the region | $50,000 | Transfer | $0 |
| Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium | Research grants to recipients in the region | $50,000 | Transfer | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 8 | Total501c3OrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I, Line 2: | FormAndLineReferenceDesc |
| Explanation | Grant applications are screened by a multi-level scientific panel and ranked. Recommendations are then presented to the Board who makes the final funding decision. One time grants are paid and a written report in both scientific terms and layperson's terms is required four months after the completion of the research project. For the two SCA Research Programs, a written progress report is also to be submitted six months after the start of the research project. When a paper or exhibit by an awardee, based on the work supported by an NAF grant, is published or presented, all papers, exhibits and press releases shall carry a credit line to the National Ataxia Foundation. Research awards are for direct costs only and cannot be used for indirect costs or institutional overhead. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | Walk n Roll | Event1Nm |
| Gross Receipts Event1 | $235,487 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $235,487 | CharitableContriEvent1Amt |
| Rent Facility Costs Event1 | $13,025 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $1,749 | FoodAndBeverageEvent1Amt |
| Other Direct Expenses Event1 | $4,250 | OtherDirectExpensesEvent1Amt |
| Gross Receipts Total | $235,487 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $235,487 | CharitableContributionsTotAmt |
| Rent Fclty Costs Total Events | $13,025 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $1,749 | FoodAndBeverageTotalEventsAmt |
| Oth Direct Expnss Total Events | $4,250 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $19,024 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$19,024 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (31 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|---|
| University of California San Francisco | |||||||||
| 550 16th St Floor 4 | San Francisco | CA | 94143 | 946036493 | 501c3 | $5,600 | $0 | Research | |
| Yale University | |||||||||
| 2 Whitney Avenue 6th Floor | New Haven | CT | 06510 | 060646973 | 501c3 | $6,250 | $0 | Research | |
| DNAVisit | |||||||||
| 13423 Moreton Gln | San Diego | CA | 92130 | 824144229 | N/A | $10,000 | $0 | Research | |
| FedEx | |||||||||
| 942 South Shady Grove Road | Memphis | TN | 38120 | 621721435 | N/A | $17,947 | $0 | Research | |
| University of Pennsylvania | |||||||||
| Franklin Building 5th floor 3451 | Philadelphia | PA | 19104 | 231352685 | 501c3 | $24,300 | $0 | Research | Walnut Street |
| Regents of the University of California Davis | |||||||||
| 1 Shields Ave | Davis | CA | 95620 | 946036494 | 501c3 | $25,000 | $0 | Research | |
| Duke University Medical Center | |||||||||
| 2200 West Main Ste 300 | Durham | NC | 27701 | 560532129 | 501c3 | $25,000 | $0 | Research | |
| Rush University Medical Center | |||||||||
| 1201 W Harrison St Suite 300 | Chicago | IL | 60607 | 362174823 | 501c3 | $25,000 | $0 | Research | |
| Northwestern University | |||||||||
| 633 Clark St | Evanston | IL | 60208 | 362167817 | 501c3 | $28,750 | $0 | Research | |
| Johns Hopkins University Department of Neurology | |||||||||
| 1101 E 33rd St Ste B001 | Baltimore | MD | 21218 | 520595110 | 501c3 | $36,200 | $0 | Research | |
| University of WashingtonUPIC | |||||||||
| 4300 Roosevelt Way NE Box 354965 | Seattle | WA | 98105 | 916001537 | 501c3 | $36,450 | $0 | Research | |
| University of Florida (Microbiology & Neurology) | |||||||||
| PO Box 100158 | Gainesville | FL | 32611 | 596002052 | 501c3 | $40,653 | $0 | Research | |
| University of Miami | |||||||||
| 1531 Brescia Ave | Coral Gables | FL | 33146 | 590624458 | 501c3 | $50,000 | $0 | Research | |
| Brigham & Women's Hospital Inc | |||||||||
| 75 Francis St | Boston | MA | 02115 | 043230035 | 501c3 | $50,000 | $0 | Research | |
| Children's Hospital of Philadelphia | |||||||||
| 3401 Civic Center Blvd | Philadelphia | PA | 19104 | 231352166 | 501c3 | $50,000 | $0 | Research | |
| Research Foundation for SUNY obo Univ at Buffalo | |||||||||
| UB Commons Suite 211 | Amherst | NY | 14228 | 141368361 | 501c3 | $50,000 | $0 | Research | |
| Greenwood Genetic Center Inc | |||||||||
| 101 Gregor Mendel Circle | Greenwood | SC | 29646 | 500604070 | N/A | $57,200 | $0 | Research | |
| Science Coach Inc | |||||||||
| 4340 Duncan Ave Suite 100 | Saint Louis | MO | 63110 | 873498906 | 501c3 | $60,000 | $0 | Research | |
| Emory University | |||||||||
| PO Box 935084 | Atlanta | GA | 31193 | 580566256 | 501c3 | $61,600 | $0 | Research | |
| GeneMatters | |||||||||
| 611 Gateway Blvd Suite 120 | Sourth San Francisco | CA | 94080 | 872058405 | N/A | $63,256 | $0 | Research | |
| Regents of the University of California Los Angeles | |||||||||
| 635 Charles E Young Dr S | Los Angeles | CA | 90095 | 956006143 | 501c3 | $71,400 | $0 | Research | |
| Indiana University - Purdue | |||||||||
| PO Box 78000 Dept 78920 | Detroit | MI | 48278 | 356001673 | 501c3 | $72,608 | $0 | Research | |
| Regents of the University of California dba University of California Irvin | |||||||||
| 228 Aldrich Hall | Irvine | CA | 92697 | 952226406 | 501c3 | $75,000 | $0 | Research | |
| Massachusetts General Hospital | |||||||||
| 125 Nashua St Suite 540 | Boston | MA | 02114 | 041564655 | 501c3 | $84,000 | $0 | Research | |
| University of North Carolina Chapel Hill | |||||||||
| 104 Airport Dr Suite 2200 CB 1350 | Chapel Hill | NC | 27599 | 566001393 | 501c3 | $85,000 | $0 | Research | |
| Regents of the University of Michigan | |||||||||
| 5082 Wolvertine Tower | Ann Arbor | MI | 48109 | 386006309 | 501c3 | $89,450 | $0 | Research | |
| Columbia University New York | |||||||||
| 615 West 131st St 3rd Fl | New York | NY | 10027 | 135598093 | 501c3 | $101,150 | $0 | Research | |
| University of South Florida | |||||||||
| 4202 E Folwer Ave SVC 1039 | Tampa | FL | 33620 | 593102112 | 501c3 | $102,852 | $0 | Research | |
| University of Texas Southwestern | |||||||||
| 5323 Harry Hines Blvd | Dallas | TX | 75390 | 756002868 | 501c3 | $111,369 | $0 | Research | |
| University of Chicago | |||||||||
| 6054 South Drexel Avenue | Chicago | IL | 60637 | 362177139 | 501c3 | $122,384 | $0 | Research | |
| Regents of the University of MN | |||||||||
| PO Box 1450 | Minneapolis | MN | 55485 | 416007513 | 501c3 | $196,568 | $0 | Research | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 26 | Total501c3OrgCnt |
| Total Other Org | 6 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I, Line 2: | FormAndLineReferenceDesc |
| Explanation | Grant applications are screened by a multi-level scientific panel and ranked. Recommendations are then presented to the Board who makes the final funding decision. One time grants are paid and a written report in both scientific terms and layperson's terms is required four months after the completion of the research project. For the two SCA Research Programs, a written progress report is also to be submitted six months after the start of the research project. When a paper or exhibit by an awardee, based on the work supported by an NAF grant, is published or presented, all papers, exhibits and press releases shall carry a credit line to the National Ataxia Foundation. Research awards are for direct costs only and cannot be used for indirect costs or institutional overhead. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantiation Required | Yes (1) | SubstantiationRequiredInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Andrew Rosen | ||||||||||||||
| Chief Executive Officer | $194,042 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $27,705 | $0 | $221,747 | $0 | $0 | $0 |
| Lauren Moore | ||||||||||||||
| VP and Chief Scientific Of | $209,482 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $6,838 | $0 | $216,320 | $0 | $0 | $0 |
| Joel Sutherland | ||||||||||||||
| Vice President Of Developm | $171,132 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $171,132 | $0 | $0 | $0 |
| Kyle Billadeau | ||||||||||||||
| Vice President | $126,766 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $25,845 | $0 | $152,611 | $0 | $0 | $0 |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part VI, Section A, line 6 | The Foundation has free memberships. Members do not having voting rights. |
| Form 990, Part VI, Section B, line 11b | The form 990 is prepared by the Certified Public Accountant with the help of the Chief Executive Officer. The preliminary form is reviewed as needed. The form 990 is then prepared and is presented at an Executive Committee or Board Meeting prior to the return being signed and submitted to the Internal Revenue Service. |
| Form 990, Part VI, Section B, line 12c | Each responsible person (officer, employee or board member) shall annually complete a disclosure form identifying any relationships, positions or circumstances which could contribute to a potential conflict of interest. Prior to Board or Committee action, all facts shall be disclosed relating to the protential conflict of interest and such disclosure will be reflected in the minutes of the meeting. The person cannot be counted towards having a quorum to vote and is not allowed to vote on the issue. They are also not allowed to exert any personal influence in the matter. The policy shall be reviewed annually by each member of the Executive Committee. |
| Form 990, Part VI, Section B, line 15 | Chief Executive Officer's position - an annual review is conducted by the Foundation's President. The performance review is based on achieving the annual goals of the Foundation. The President annually evaluates the performance in a written report and then presents the review and recommendations to the Board/Executive Committee who determine any actions, including pay raises. Other Employees - The Chief Executive Officer annually evaluates the performance of employees in a written reported saved in each employee's permanent file. The Chief Executive Officer has a salary budget as set by the full Board of Directors. The Chief Executive Officer has full discretion on the percentage of pay raises to individuals not to exceed the approved budget. |
| Form 990, Part VI, Section C, line 19 | The Foundation will furnish all requests for organizing documents, conflict of interest policies and financial statements upon request. The financial statements are posted on the Foundation's website. The 990 is also available on Guidestar.org and Candid.org. |
| Form 990, Part XII, Line 2c: | The Foundation's Finance Committee is responsible for the oversight of the audit. |