DRAVET SYNDROME FOUNDATION INC: Form 990, tax year 2025
View the entire original 990 at ProPublica ↗
- Organization
- DRAVET SYNDROME FOUNDATION INC (EIN 27-0924627)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-04-29
- IRS object ID
- 202631199349301853
- Schema version
- 2025v4.0
- 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 C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule L
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2026-04-29T10:17:36-07:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2025-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 270924627 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | DRAVET SYNDROME FOUNDATION INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | DRAV | BusinessNameControlTxt |
| Phone | 2033921955 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO Box 3026 | AddressLine1Txt |
| City | Cherry Hill | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 08034 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Ross Nicholas | PersonNm |
| Person Title | Board Chair | PersonTitleTxt |
| Phone | 2033921955 | PhoneNum |
| Signature | 2026-04-27 | SignatureDt |
| 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 | Mary Anne Meskis | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO Box 3026 | AddressLine1Txt |
| City | Cherry Hill | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 08002 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $5,169,419 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.dravetfoundation.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2009 | FormationYr |
| Legal Domicile State | CT | LegalDomicileStateCd |
| Activity Or Mission | The mission of the Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome & related epilepsies; support & fund research; increase awareness; & provide support to affected individuals & families. | ActivityOrMissionDesc |
| Voting Members Governing Body | 8 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 8 | VotingMembersIndependentCnt |
| Total Employee | 13 | TotalEmployeeCnt |
| Total Volunteers | 100 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,106,931 | PYContributionsGrantsAmt |
| CY Contributions Grants | $3,831,992 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $734,789 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $600,050 | CYProgramServiceRevenueAmt |
| PY Investment Income | $304,376 | PYInvestmentIncomeAmt |
| CY Investment Income | $273,034 | CYInvestmentIncomeAmt |
| PY Other Revenue | $75,526 | PYOtherRevenueAmt |
| CY Other Revenue | $47,167 | CYOtherRevenueAmt |
| PY Total Revenue | $4,221,622 | PYTotalRevenueAmt |
| CY Total Revenue | $4,752,243 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,509,120 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $3,290,753 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $841,275 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $909,231 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $231,048 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $908,777 | PYOtherExpensesAmt |
| CY Other Expenses | $583,681 | CYOtherExpensesAmt |
| PY Total Expenses | $4,259,172 | PYTotalExpensesAmt |
| CY Total Expenses | $4,783,665 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$37,550 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$31,422 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $8,536,916 | TotalAssetsBOYAmt |
| Total Assets EOY | $9,833,611 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $1,510,060 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $2,652,358 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $7,026,856 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $7,181,253 | NetAssetsOrFundBalancesEOYAmt |
| Mission | The mission of the Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome & related epilepsies; support & fund research; increase awareness; & provide support to affected individuals & families. We understand the ongoing need to fund innovative research, the urgency in finding better treatments, the motivation of our donors to make an impact specifically in the fields of Dravet syndrome and related epilepsies, the importance of transparency and accountability of not only our organization, but the researchers that we fund, and the need for global collaboration in order to find a cure. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $3,444,887 | ExpenseAmt |
| Grant | $3,262,635 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | DSF funds research for better treatments and a cure for Dravet syndrome and related epilepsies by awarding research grants to qualified scientists and clinicians. These grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Since 2009, DSF has awarded over $14.1 million to 84 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. DSF has also supported the development of a commercial line of iPSC cells for researchers and the biotechnology industry. DSF's Chief Scientific Officer serves as the liaison between the medical/scientific community and DSF, developing strategies to support research, manage DSF's involvement in projects, and move projects forward with assistance in project management, manuscript preparation, and other writing opportunities. The Chief Scientific Director acts as a representative of DSF to other institutions including NIH, FDA, pharma and biotechnology companies. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $459,959 | ExpenseAmt |
| Grant | $28,118 | GrantAmt |
| Revenue | $414,125 | RevenueAmt |
| Desc | Receiving a diagnosis of Dravet syndrome (DS) can be overwhelming, leaving families with many unanswered questions. To support our patient community, DSF provides a variety of educational, advocacy, and support resources: These initiatives are part of DSF's commitment to providing vital resources and fostering a strong, supportive community for those affected by Dravet syndrome. DSF Family Network: Open to any parent, legal guardian, or sibling interested in our advocacy services and programs, the Family Network keeps members informed about new advocacy tools, clinical trials, educational opportunities, and fundraising events. It also includes moderated private Facebook support groups for parents and caregivers of individuals with Dravet syndrome. Membership is limited to those legally responsible for making medical decisions for the patient. In 2025, 280 people joined the Family Network. Newly Diagnosed Kits: DSF provides newly diagnosed families with a kit that includes a guidebook for navigating life after diagnosis, a medication bag, and other materials to ensure they have the knowledge and tools needed for their child's care. In 2025, DSF distributed 115 kits. Patient Assistance Grants: The DSF Patient Assistance Grant Program offers financial support to patients with Dravet syndrome and related SCN1A epilepsies for medical equipment, therapy devices, and educational aids not covered by private insurance or other programs. This program is available to all patients worldwide who are members of the DSF Family Network. Since 2009, DSF has awarded $306,000 to 265 families. Birthday Buddies: Families can register their loved one with Dravet syndrome to receive a birthday card and small gift from DSF's mascot, Aurora, around their birthday. In 2025, DSF sent 677 gifts. Super Siblings Club: DSF provides a day camp at our biennial conference and annual Day of Dravet workshops for siblings of individuals with Dravet syndrome. These events offer a fun and supportive environment for siblings to connect, express their feelings, and bond with others facing similar challenges. Bereavement Support: Losing a loved one, especially a child, is profoundly painful. DSF offers resources for coping with grief, including a Bereavement Support Group and Remembrance Wall. Legislative Advocacy Program: We are committed to keeping our patient community informed about legislative actions affecting Medicaid and rare disease research, which are essential for maintaining access to care and driving advancements in treatment for Dravet syndrome. By ensuring our constituents have accurate and nonpartisan information, they can advocate for their loved one and family effectively. Biennial Conference: This 3-day event brings together families, caregivers, clinicians, researchers, and pharmaceutical professionals to collaborate on improving the lives of those with Dravet syndrome. The conference features presentations on the latest research and patient care, fostering new relationships and collaborations. Over 500 people attended the 2024 conference. Day of Dravet Workshops: Held in alternating years from the biennial conference, these workshops offer families the opportunity to learn about research, treatment options, and connect with others. Sessions are led by community experts, including fellow parents. The workshops also include our VIP Sib Camp and activities for patients. In 2025, 470 attendees, representing 123 families participated at workshops in Texas (San Antonio), Tennessee (Sevierville), Washington (Tacoma), Illinois (Gurnee), and Pennsylvania (Hershey). | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $168,401 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Revenue | $185,925 | RevenueAmt |
| Desc | DSF produces an annual research roundtable meeting to provide opportunity for researchers and clinicians to collaborate and discuss better treatment options and a roadmap toward a cure and how to best facilitate both. This meeting started in 2010 as a brainstorming session for the few researchers working on Dravet syndrome. DSF hosted its 16th annual Research Roundtable with nearly 190 participants. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $0 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $0 | TotalOtherProgSrvcGrantAmt |
| Total Other Prog Srvc Revenue | $0 | TotalOtherProgSrvcRevenueAmt |
| Total Program Service Expenses | $4,073,247 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | 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 | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | 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 | Yes (1) | 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 | Yes (1) | 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 | 14 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 13 | 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 | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| 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 | 8 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 8 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | Yes (1) | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | 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 | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Jamie Cohen | PersonNm |
| Phone | 2033921955 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 522 Mackin Drive | AddressLine1Txt |
| City | Cherry Hill | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 08002 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (13 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd |
|---|---|---|---|---|---|---|---|---|
| Mary Anne Meskis | ||||||||
| Chief Executive Officer | 40 | 0 | Yes (X) | $179,356 | $0 | $7,165 | ||
| Veronica Hood PhD | ||||||||
| Chief Scientific Officer | 40 | 0 | $174,406 | $0 | $6,967 | Yes (X) | ||
| Jamie Cohen CPA | ||||||||
| Chief Financial Officer | 40 | 0 | Yes (X) | $114,984 | $0 | $4,590 | ||
| Ross Nicholas | ||||||||
| Chair | 1 | 0 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Gail Farfel PhD | ||||||||
| Vice Chair | 1 | 0 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Claire Carey | ||||||||
| Secretary | 1 | 0 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Josh Goldman | ||||||||
| Treasurer | 1 | 0 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Nathan Batt | ||||||||
| Director | 1 | 0 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Bill Kirshner MD | ||||||||
| Director | 1 | 0 | $0 | $0 | $0 | Yes (X) | ||
| Amanda Prather PA-C | ||||||||
| Director | 1 | 0 | $0 | $0 | $0 | Yes (X) | ||
| Mike Chieco | ||||||||
| Director | 1 | 0 | $0 | $0 | $0 | Yes (X) | ||
| Ted Odlaug PhD | ||||||||
| Director | 1 | 0 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Joseph Sullivan MD | ||||||||
| Director | 1 | 0 | $0 | $0 | $0 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $468,746 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $18,722 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 3 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp
Contractor Name ContractorName
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Geben Communication | BusinessNameLine1Txt |
Contractor Address ContractorAddress
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 143 E Main St 200 | AddressLine1Txt |
| City | Columbus | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 43215 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Services | Media Relations | ServicesDesc |
| Compensation | $150,000 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $0 | FederatedCampaignsAmt |
| Membership Dues | $0 | MembershipDuesAmt |
| Fundraising | $1,977,729 | FundraisingAmt |
| Related Organizations | $0 | RelatedOrganizationsAmt |
| Government Grants | $0 | GovernmentGrantsAmt |
| All Other Contributions | $1,854,263 | AllOtherContributionsAmt |
| Noncash Contributions | $0 | NoncashContributionsAmt |
| Total Contributions | $3,831,992 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt | Unrelated Business RevenueUnrelatedBusinessRevenueAmt | ExclusionExclusionAmt |
|---|---|---|---|---|---|
| Professional Education & Meetings | 813319 | $185,925 | $185,925 | $0 | $0 |
| Patient & Family Services | 813319 | $414,125 | $414,125 | $0 | $0 |
Total Oth Program Service Rev TotalOthProgramServiceRevGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $0 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $600,050 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $273,034 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $273,034 | ExclusionAmt |
Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $0 | ExclusionAmt |
Royalties Revenue RoyaltiesRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $0 | ExclusionAmt |
Rental Income Or Loss RentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Real | $0 | RealAmt |
| Personal | $0 | PersonalAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $0 | SecuritiesAmt |
| Other | $0 | OtherAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $464,343 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,977,729 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $417,176 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $47,167 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $47,167 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $0 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $4,752,243 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $600,050 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $320,201 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,777,635 | TotalAmt |
| Program Services | $2,777,635 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $25,786 | TotalAmt |
| Program Services | $25,786 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $487,332 | TotalAmt |
| Program Services | $487,332 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $499,858 | TotalAmt |
| Program Services | $223,055 | ProgramServicesAmt |
| Management And General | $270,399 | ManagementAndGeneralAmt |
| Fundraising | $6,404 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $325,844 | TotalAmt |
| Program Services | $138,112 | ProgramServicesAmt |
| Management And General | $37,312 | ManagementAndGeneralAmt |
| Fundraising | $150,420 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,820 | TotalAmt |
| Program Services | $5,544 | ProgramServicesAmt |
| Management And General | $133 | ManagementAndGeneralAmt |
| Fundraising | $5,143 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,889 | TotalAmt |
| Program Services | $3,600 | ProgramServicesAmt |
| Management And General | $566 | ManagementAndGeneralAmt |
| Fundraising | $2,723 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $65,820 | TotalAmt |
| Program Services | $28,580 | ProgramServicesAmt |
| Management And General | $24,096 | ManagementAndGeneralAmt |
| Fundraising | $13,144 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,500 | TotalAmt |
| Management And General | $11,500 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $156,594 | TotalAmt |
| Program Services | $120,400 | ProgramServicesAmt |
| Management And General | $36,194 | ManagementAndGeneralAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $184 | TotalAmt |
| Management And General | $184 | ManagementAndGeneralAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $65,777 | TotalAmt |
| Program Services | $18,280 | ProgramServicesAmt |
| Management And General | $26,376 | ManagementAndGeneralAmt |
| Fundraising | $21,121 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $32,847 | TotalAmt |
| Program Services | $6,699 | ProgramServicesAmt |
| Management And General | $23,465 | ManagementAndGeneralAmt |
| Fundraising | $2,683 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,284 | TotalAmt |
| Program Services | $1,428 | ProgramServicesAmt |
| Management And General | $1,428 | ManagementAndGeneralAmt |
| Fundraising | $1,428 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $60,237 | TotalAmt |
| Program Services | $44,990 | ProgramServicesAmt |
| Management And General | $10,462 | ManagementAndGeneralAmt |
| Fundraising | $4,785 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $196,170 | TotalAmt |
| Program Services | $187,064 | ProgramServicesAmt |
| Management And General | $5,388 | ManagementAndGeneralAmt |
| Fundraising | $3,718 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,951 | TotalAmt |
| Management And General | $2,951 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,093 | TotalAmt |
| Program Services | $777 | ProgramServicesAmt |
| Management And General | $4,905 | ManagementAndGeneralAmt |
| Fundraising | $411 | FundraisingAmt |
Other Expenses OtherExpensesGrp (2 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Charity Registration Fees | $4,446 | $0 | $4,446 | $0 |
| Dues & Subscriptions | $42,598 | $3,965 | $19,565 | $19,068 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,783,665 | TotalAmt |
| Program Services | $4,073,247 | ProgramServicesAmt |
| Management And General | $479,370 | ManagementAndGeneralAmt |
| Fundraising | $231,048 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $383,617 | BOYAmt |
| EOY | $420,091 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,696,246 | BOYAmt |
| EOY | $1,545,160 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $36,352 | BOYAmt |
| EOY | $175,474 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $19,025 | BOYAmt |
| EOY | $45,214 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $56,059 | BOYAmt |
| EOY | $129,081 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $11,435 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $2,951 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $8,484 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,345,617 | BOYAmt |
| EOY | $7,510,107 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,536,916 | BOYAmt |
| EOY | $9,833,611 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $50,233 | BOYAmt |
| EOY | $110,097 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,442,946 | BOYAmt |
| EOY | $2,520,965 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $16,881 | BOYAmt |
| EOY | $21,296 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,510,060 | BOYAmt |
| EOY | $2,652,358 | 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 | $6,988,189 | BOYAmt |
| EOY | $6,761,560 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $38,667 | BOYAmt |
| EOY | $419,693 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,026,856 | BOYAmt |
| EOY | $7,181,253 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,536,916 | BOYAmt |
| EOY | $9,833,611 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | -$31,422 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $143,239 | NetUnrlzdGainsLossesInvstAmt |
| Donated Services And Use Fclts | $0 | DonatedServicesAndUseFcltsAmt |
| Investment Expense | $0 | InvestmentExpenseAmt |
| Prior Period Adjustments | $0 | PriorPeriodAdjustmentsAmt |
| Other Changes In Net Assets | $42,580 | OtherChangesInNetAssetsAmt |
| 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 | $1,437,446 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,713,227 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,530,132 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,106,930 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,831,992 | CurrentTaxYearAmt |
| Total | $12,619,727 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,437,446 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,713,227 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,530,132 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,106,930 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,831,992 | CurrentTaxYearAmt |
| Total | $12,619,727 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Total170 | $12,619,727 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $5,151 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $88,364 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $218,415 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $304,376 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $273,034 | CurrentTaxYearAmt |
| Total | $889,340 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $13,509,067 | TotalSupportAmt |
| Public Support CY170 | 0.93417 | PublicSupportCY170Pct |
| Public Support PY170 | 0.94060 | 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 C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $1,682 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $2,099 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $3,781 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,779,885 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,783,666 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $389,183 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $97,296 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $0 | CurrentYearMinus3Amt |
| Current Year Minus2 | $0 | CurrentYearMinus2Amt |
| Current Year Minus1 | $362,959 | CurrentYearMinus1Amt |
| Current Year | $389,183 | CurrentYearAmt |
| Total | $752,142 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $1,128,213 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $0 | CurrentYearMinus3Amt |
| Current Year Minus2 | $0 | CurrentYearMinus2Amt |
| Current Year Minus1 | $9,282 | CurrentYearMinus1Amt |
| Current Year | $3,781 | CurrentYearAmt |
| Total | $13,063 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $0 | CurrentYearMinus3Amt |
| Current Year Minus2 | $0 | CurrentYearMinus2Amt |
| Current Year Minus1 | $90,740 | CurrentYearMinus1Amt |
| Current Year | $97,296 | CurrentYearAmt |
| Total | $188,036 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $282,054 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $0 | CurrentYearMinus3Amt |
| Current Year Minus2 | $0 | CurrentYearMinus2Amt |
| Current Year Minus1 | $2,984 | CurrentYearMinus1Amt |
| Current Year | $1,682 | CurrentYearAmt |
| Total | $4,666 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $937,673 | BeginningYearBalanceAmt |
| Contributions | $360,009 | ContributionsAmt |
| Investment Earnings Or Losses | $170,628 | InvestmentEarningsOrLossesAmt |
| Grants Or Scholarships | $0 | GrantsOrScholarshipsAmt |
| Other Expenditures | $0 | OtherExpendituresAmt |
| Administrative Expenses | $0 | AdministrativeExpensesAmt |
| End Year Balance | $1,468,310 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $549,579 | BeginningYearBalanceAmt |
| Contributions | $271,071 | ContributionsAmt |
| Investment Earnings Or Losses | $117,023 | InvestmentEarningsOrLossesAmt |
| Grants Or Scholarships | $0 | GrantsOrScholarshipsAmt |
| Other Expenditures | $0 | OtherExpendituresAmt |
| Administrative Expenses | $0 | AdministrativeExpensesAmt |
| End Year Balance | $937,673 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $228,680 | BeginningYearBalanceAmt |
| Contributions | $250,000 | ContributionsAmt |
| Investment Earnings Or Losses | $70,899 | InvestmentEarningsOrLossesAmt |
| Grants Or Scholarships | $0 | GrantsOrScholarshipsAmt |
| Other Expenditures | $0 | OtherExpendituresAmt |
| Administrative Expenses | $0 | AdministrativeExpensesAmt |
| End Year Balance | $549,579 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $275,171 | BeginningYearBalanceAmt |
| Contributions | $0 | ContributionsAmt |
| Investment Earnings Or Losses | -$46,491 | InvestmentEarningsOrLossesAmt |
| Grants Or Scholarships | $0 | GrantsOrScholarshipsAmt |
| Other Expenditures | $0 | OtherExpendituresAmt |
| Administrative Expenses | $0 | AdministrativeExpensesAmt |
| End Year Balance | $228,680 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $101,887 | BeginningYearBalanceAmt |
| Contributions | $150,000 | ContributionsAmt |
| Investment Earnings Or Losses | $23,285 | InvestmentEarningsOrLossesAmt |
| Grants Or Scholarships | $0 | GrantsOrScholarshipsAmt |
| Other Expenditures | $0 | OtherExpendituresAmt |
| Administrative Expenses | $0 | AdministrativeExpensesAmt |
| End Year Balance | $275,172 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.9993 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.0007 | PrmnntEndowmentBalanceEOYPct |
| Term Endowment Balance EOY | 0 | TermEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Land LandGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $0 | InvestmentCostOrOtherBasisAmt |
| Other Cost Or Other Basis | $0 | OtherCostOrOtherBasisAmt |
| Book Value | $0 | BookValueAmt |
Buildings BuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $0 | InvestmentCostOrOtherBasisAmt |
| Other Cost Or Other Basis | $0 | OtherCostOrOtherBasisAmt |
| Depreciation | $0 | DepreciationAmt |
| Book Value | $0 | BookValueAmt |
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $0 | InvestmentCostOrOtherBasisAmt |
| Other Cost Or Other Basis | $0 | OtherCostOrOtherBasisAmt |
| Depreciation | $0 | DepreciationAmt |
| Book Value | $0 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $0 | InvestmentCostOrOtherBasisAmt |
| Other Cost Or Other Basis | $11,435 | OtherCostOrOtherBasisAmt |
| Depreciation | $2,951 | DepreciationAmt |
| Book Value | $8,484 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $0 | InvestmentCostOrOtherBasisAmt |
| Other Cost Or Other Basis | $0 | OtherCostOrOtherBasisAmt |
| Depreciation | $0 | DepreciationAmt |
| Book Value | $0 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $8,484 | TotalBookValueLandBuildingsAmt |
| Federal Income Tax Liability | $0 | FederalIncomeTaxLiabilityAmt |
| Total Liability | $0 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $4,895,482 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $143,239 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $0 | DonatedServicesAndUseFcltsAmt |
| Recoveries Prior Year Grants | $0 | RecoveriesPriorYearGrantsAmt |
| Other Revenue | $0 | OtherRevenueAmt |
| Revenue Not Reported | $143,239 | RevenueNotReportedAmt |
| Revenue Subtotal | $4,752,243 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $0 | InvestmentExpensesNotIncldAmt |
| Other Revenues Not Included | $0 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $4,752,243 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $4,741,085 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $0 | DonatedServicesUseFcltsAmt |
| Prior Year Adjustments | $0 | PriorYearAdjustmentsAmt |
| Losses Reported | $0 | LossesReportedAmt |
| Other Expenses Included | $0 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $0 | ExpensesNotReportedAmt |
| Expenses Subtotal | $4,741,085 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $0 | InvestmentExpensesNotIncld2Amt |
| Other Expenses Not Included | $42,580 | OtherExpensesNotIncludedAmt |
| Expenses Not Rpt Fincl Stmt | $42,580 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $4,783,665 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Schedule D, Part V, Line 4 | The purpose of the Endowment is to support the mission of the Foundation by providing an alternative source of funds for current and future use. The endowment has two primary goals. First, the principal of the endowment's assets which are not self-funded, must be preserved in perpetuity; second, the endowment should strive to achieve investment returns sufficient to supplement ongoing Foundation operations. To the extent these first two goals are achieved, the Foundation endeavors to grow the endowment so that it represents an even larger source of funding for future generations. |
| Schedule D, Part X, Line 2 | DSF recognizes the effect of tax positions only when they are more than likely than not of being sustained. Management has determined that DSF had no uncertain tax positions that qualify for either recognition or disclosure in the financial statements. In the normal course of business DSF's tax filings are subjected to examination by federal and state authorities. The tax returns for the years ended December 31, 2022 and forward are subject to examination by taxing authorities. |
| Schedule D, Part XII, Line 4b | Present value discount on grant payable not recognized on Form 990. |
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 | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|
| Europe (including Iceland and Greenland) | 0 | 0 | Grantmaking | $355,000 |
| Middle East and North Africa | 0 | 0 | Grantmaking | $130,000 |
| North America (including Canada and Mexico, but not the United States) | 0 | 0 | Grantmaking | $2,332 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Spent | $487,332 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt | Valuation Method UsedValuationMethodUsedDesc |
|---|---|---|---|---|---|
| Europe (including Iceland and Greenland) | 1. Leiden University Medical Center - Research Grant: Neurophysiological Characterization of the Therapeutic Effect of Exogenous Nav1.1 Channels - $110,000. 2.Royal College of Surgeons Ireland - Postdoctoral Fellowship: Multi-Target Strategy for Dravet Syndrome: Enhancing Sodium Channels and GABA Receptors via miRNA Inhibition - $75,000. 3. Institut de Génétique Moléculaire de Montpellier, in conjunction with Tel Aviv University and The Children's Hospital of Philadelphia - Transformational Science Grant: Molecular Characterization of the Therapeutic Effect of Exogenous Nav1.1 - $170,000. Details for each of these projects can be found at https://dravetfoundation.org/dsf-funded-research/ | $355,000 | Wire Transfer | $0 | FMV |
| Middle East and North Africa | Tel Aviv University in conjunction with Institut de Génétique Moléculaire de Montpellier and The Children's Hospital of Philadelphia - Transformational Science Grant: Molecular Characterization of the Therapeutic Effect of Exogenous Nav1.1. This study investigates how introducing functional Nav1.1 sodium channels affects cellular and molecular processes. The goal is to better understand how restoring this protein alters neuronal signaling, protein interactions, and downstream pathways. By mapping these effects, researchers aim to identify mechanisms of therapeutic benefit and potential biomarkers of response. Insights from this work will guide optimization of Nav1.1-based therapies and support the development of more targeted and effective treatment strategies. | $130,000 | Wire Transfer | $0 | FMV |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 3 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
| 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 | Schedule F, Part I, Line 2 | FormAndLineReferenceDesc |
| Explanation | DSF provides funds for research. The organizations receiving this assistance are required to provide written progress reports on their research into finding a cure for Dravet syndrome and related epilepsies. The Chief Scientific Officer of DSF reviews the written progress reports and discusses the research projects and progress with the awarded organization. DSF also provides funding to patients with Dravet syndrome and related epilepsies for necessary medical equipment, therapy devices and education aids associated with these conditions that are not covered through private insurance or other assistance programs. Applicants are required to submit an application that includes a recent letter from the child's healthcare provider explaining the medical necessity of the request and when possible, a letter of denial from the insurance provider. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | Dance for Dravet | Event1Nm |
| Gross Receipts Event1 | $889,679 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $699,303 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $190,376 | GrossRevenueEvent1Amt |
| Cash Prizes Event1 | $0 | CashPrizesEvent1Amt |
| Non Cash Prizes Event1 | $0 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $14,297 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $77,846 | FoodAndBeverageEvent1Amt |
| Entertainment Event1 | $7,262 | EntertainmentEvent1Amt |
| Other Direct Expenses Event1 | $30,866 | OtherDirectExpensesEvent1Amt |
| Event2 | City Bash: Rally for Dravet | Event2Nm |
| Gross Receipts Event2 | $489,973 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $437,161 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $52,812 | GrossRevenueEvent2Amt |
| Cash Prizes Event2 | $0 | CashPrizesEvent2Amt |
| Non Cash Prizes Event2 | $0 | NonCashPrizesEvent2Amt |
| Rent Facility Costs Event2 | $30,310 | RentFacilityCostsEvent2Amt |
| Food And Beverage Event2 | $26,844 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $1,925 | EntertainmentEvent2Amt |
| Other Direct Expenses Event2 | $30,309 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 19 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,062,420 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $841,264 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $221,156 | GrossRevenueOtherEventsAmt |
| Cash Prizes Other Events | $0 | CashPrizesOtherEventsAmt |
| Non Cash Prizes Other Events | $0 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $29,242 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $73,519 | FoodAndBeverageOtherEventsAmt |
| Entertainment Other Events | $17,325 | EntertainmentOtherEventsAmt |
| Oth Direct Expnss Other Events | $77,430 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $2,442,072 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,977,728 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $464,344 | GrossRevenueTotalEventsAmt |
| Cash Prizes Total Events | $0 | CashPrizesTotalEventsAmt |
| Non Cash Prizes Total Events | $0 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $73,849 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $178,209 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $26,512 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $138,605 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $417,175 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $47,169 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (9 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Valuation Method UsedValuationMethodUsedDesc | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|---|
| Regents of the University of Michigan | |||||||||
| 3003 South State Street | Ann Arbor | MI | 48109 | 386006309 | 501(c)(3) | $779,250 | $0 | FMV | 1. University of Michigan - Special Project Funding:Understanding Phenotypes and Biomarkers Leading to SUDEP in a Transgenic Rabbit Model - $750,000. This study uses a transgenic rabbit model of Dravet syndrome to identify observable traits and measurable biomarkers associated with increased risk of sudden unexpected death in epilepsy (SUDEP). The goal is to characterize physiological, behavioral, and cardiac indicators that precede critical events. By establishing reliable biomarkers, the research aims to improve risk stratification and enable earlier intervention. The model also provides a platform for testing preventative strategies and understanding underlying mechanisms. 2. In conjunction with Stanford University - Special Project Funding: Identification of Behavioral Biomarkers in Children with DS: A Pilot Study - $29,250. Details for each of these projects can be found at https://dravetfoundation.org/dsf-funded-research/ |
| Regents of the University of Colorado | |||||||||
| 1800 N Grant St Ste 200 | Denver | CO | 80203 | 846000555 | 501(c)(3) | $662,231 | $0 | FMV | Dravet Syndrome Natural History Study. The Natural History study will recruit and follow children and adults with Dravet Syndrome to track how often and how severely issues like behavior, development, sleep, appetite, autonomic symptoms, and motor function occur and change over time. The study will establish a robust database that will capture standardized clinical, neuropsychological, and parent-reported data on key signs and symptoms across the lifetime. The study will also explore how these outcomes connect to specific genetic changes to better understand how different types of mutations might influence Dravet Syndrome. This study will increase understanding of Dravet syndrome, and lead to better design of treatments and clinical trials. |
| Allen Institute | |||||||||
| 615 Westlake Ave N | Seattle | WA | 98109 | 912155317 | 501(c)(3) | $449,785 | $0 | FMV | Circuit-Selective Whole SCN1A Gene Delivery for Dravet Syndrome. This research focuses on delivering a full-length functional gene specifically to affected neural circuits rather than broadly across the brain utilizing different mouse models of Dravet syndrome. The goal is to improve therapeutic precision while minimizing off-target effects. Using advanced vector systems and targeting strategies, the team aims to restore gene function in key cell populations responsible for disease symptoms. This approach seeks to enhance efficacy and safety of gene therapy by tailoring delivery to the most relevant neural networks. |
| The Board of Trustees of the Leland Stanford Junior University | |||||||||
| 450 Jane Stanford Way | Stanford | CA | 943052004 | 941156365 | 501(c)(3) | $309,500 | $0 | FMV | Identification of Behavioral Biomarkers in Children with DS: A Pilot Study In conjunction with University of Michigan, this pilot study seeks utilize AI and machine learning to identify subtle but measurable behavioral patterns that can serve as biomarkers for disease progression and treatment response in Dravet syndrome that would be undetectable using traditional observational methods. Researchers aim to define objective indicators of cognitive, social, and functional changes with the goal to improve clinical trial endpoints and enable more sensitive tracking of outcomes. Findings may support the development of better tools for evaluating therapeutic impact in patient populations. |
| Children's Hospital of Pennsylvania | |||||||||
| 2716 South Street | Philadelphia | PA | 191462305 | 231352166 | 501(c)(3) | $240,000 | $0 | FMV | 1. In conjunction with Tel Aviv University and Institut de Génétique Moléculaire de Montpellier - Transformational Science Grant: Molecular Characterization of the Therapeutic Effect of Exogenous Nav1.1 - $150,000. 2. In conjunction with MIT and Harvard University - Research Grant: Base Editing for the Treatment and Prevention of Dravet Syndrome - $90,000. Details for each of these projects can be found at https://dravetfoundation.org/dsf-funded-research/ |
| The Broad Institute of MIT and Harvard | |||||||||
| 415 Main Street | Cambridge | MA | 02142 | 263428781 | 501(c)(3) | $100,000 | $0 | FMV | In conjunction with The Children's Hospital of Philadelphia, Base Editing for the Treatment and Prevention of Dravet Syndrome. This project aims to develop a precision gene-editing approach using base editing technology to directly correct disease-causing mutations at the DNA level using a mouse model of Dravet syndrome. The goal is to create a durable, potentially one-time treatment that can restore normal gene function without introducing double-strand DNA breaks. Researchers are working to optimize delivery systems, improve editing efficiency, and evaluate safety in relevant models. Ultimately, the project seeks to establish a foundation for preventive or early-intervention therapies that address the root genetic cause rather than managing symptoms. |
| The Research Foundation for the State University of New York | |||||||||
| 35 State Street | Albany | NY | 12207 | 141368361 | 501(c)(3) | $100,000 | $0 | FMV | Award Supplement for Genetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities. This project investigates the genetic and physiological factors underlying autonomic and cardiac dysfunction in Dravet syndrome and closely related epilepsy disorders. The goal is to identify specific triggers and biological mechanisms that contribute to irregular heart rhythms and autonomic instability. Researchers are integrating genetic analysis with physiological monitoring to better understand risk factors. Insights from this work may inform strategies to predict, monitor, and reduce life-threatening complications for Dravet syndrome. |
| The Children's Hospital Corporation dba Boston Children's Hospital | |||||||||
| 300 Longwood Avenue | Boston | MA | 02115 | 042774441 | 501(c)(3) | $77,500 | $0 | FMV | Selective Activation of Hippocampal Parvalbumin Interneurons via Focused Ultrasound Neuromodulation for Seizure Suppression in SCN1A Mice. This project evaluates a non-invasive neuromodulation approach using focused ultrasound to selectively activate specific inhibitory neurons in the brain. By targeting parvalbumin interneurons in the hippocampus, researchers aim to reduce hyperexcitability and suppress seizures in Dravet syndrome. The study assesses feasibility, precision, and effectiveness in preclinical models, while also examining safety and durability of the response. The long-term goal is to develop a targeted, non-pharmacological intervention for seizure control. |
| Coriell Institute for Medical Research | |||||||||
| 403 Haddon Ave | Camden | NJ | 08103 | 210672684 | 501(c)(3) | $9,369 | $0 | FMV | Creating a biobank of patient-derived induced pluripotent stem cells. This project aims to establish a biobank of five unique lines of commercially-available induced pluripotent stem cells (iPSCs) from patient blood samples. The cellular reprogramming will be conducted by the Coriell Institute for Medical Research and samples will be housed and distributed through an additional partnership with the Orphan Disease Center at The University of Pennsylvania. Cell lines will be available to researchers in academic and for-profit research settings at a low cost, set to cover the long-term maintenance of the biobank effort. |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 9 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (2 entries)
| Grant TypeGrantTypeTxt | RecipientRecipientCnt | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Valuation Method UsedValuationMethodUsedDesc | Non Cash AssistanceNonCashAssistanceDesc |
|---|---|---|---|---|---|
| Patient Assistance Grants. DSF supports families living with Dravet syndrome and related epilepsies through several targeted grant programs. Our Patient Assistance Grants help cover the cost of essential medical equipment, therapeutic devices, educational supports, and specialized dietary needs not funded by insurance or other programs, and are available to DSF Family Network members worldwide. Additionally, in the U.S., Disaster Relief and Recovery Grants provide $500 Visa or Amazon e-cards to families impacted by significant natural disasters to assist with urgent needs such as housing and food. Bereavement Grants offer $1,000 in flexible support to families who have lost a child, while Caregiver Connect Grants provide up to $500 to support small, regional gatherings that foster connection and peer support. | 28 | $2,373 | $22,613 | FMV | Items that are currently covered under this program include: durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.), therapy equipment, communication devices such as iPads, and costs associated with implementation of the ketogenic diet. By awarding these grants, DSF is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating Dravet syndrome and associated epilepsies and conditions. DSF and its Board of Directors are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for the situation. |
| Caregiver Connect Grants. Caregiver Connect Grants are available from $100-$400 and can partially or fully fund a local Dravet family gathering or an ongoing Dravet support group in your area. The goal of the grants is to allow our community members to connect and receive support from one another. At this time, Caregiver Connect grants are only available for events within the United States that are members of the DSF Family Network. Funds are not available for parties for an individual child or family, awareness events, or for the benefit of individuals outside of the Dravet community. | 2 | $800 | $0 | FMV |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Schedule I, Part I, Line 2 | FormAndLineReferenceDesc |
| Explanation | DSF provides funds for research. The organizations receiving this assistance are required to provide written progress reports on their research into finding a cure for Dravet syndrome and related epilepsies. The Chief Scientific Officer of DSF reviews the written progress reports and discusses the research projects and progress with the awarded organization. DSF is committed to supporting families in meaningful and practical ways through a range of patient community-focused grant programs. These include: Patient Assistance Grants, which help cover the cost of essential medical and therapeutic equipment. Disaster Relief Grants, designed to provide immediate assistance to families impacted by natural disasters during times of unexpected hardship. Caregiver Connect Grants, which fund opportunities for families to come together regionally, fostering connection, shared experiences, and peer support. Bereavement Grants, offering compassionate support to families who have experienced the loss of a child. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Independent Consultant | Yes (X) | IndependentConsultantInd |
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| 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 (2 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Mary Anne Meskis | ||||||||||||||
| Chief Executive Officer | $178,156 | $0 | $0 | $0 | $1,200 | $0 | $7,165 | $0 | $0 | $0 | $186,521 | $0 | $0 | $0 |
| Veronica Hood PhD | ||||||||||||||
| Chief Scientific Officer | $173,206 | $0 | $0 | $0 | $1,200 | $0 | $6,967 | $0 | $0 | $0 | $181,373 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Schedule J, Part II | FormAndLineReferenceDesc |
| Explanation | Compensation reported in Part VII and Schedule J reflects calendar-year Form W-2 reportable compensation. The organization accrued a bonus of $4,458 to Mary Anne Meskis and $4,182 to Veronica Hood for 2025 that was paid in 2026 and will be reported on the employee's 2026 Form W-2. Accordingly, the bonus is included in 2025 compensation expense in Part IX but not in Part VII or Schedule J for 2025. | ExplanationTxt |
Schedule L IRS990ScheduleL
Bus Tr Involve Interested Prsn BusTrInvolveInterestedPrsnGrp (2 entries)
| Relationship DescriptionRelationshipDescriptionTxt | TransactionTransactionAmt | TransactionTransactionDesc | Sharing Of RevenuesSharingOfRevenuesInd |
|---|---|---|---|
| Substantial Contributor | |||
| Board Trustee of Organization | $150,000 | Contribution | 0 |
| Substantial Contributor | |||
| Board Trustee of Organization | $558,679 | Contribution | 0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Schedule L, Part IV | FormAndLineReferenceDesc |
| Explanation | Two board members also serve on two other 501(c)(3) organizations dedicated to advancing research for Dravet syndrome. Rather than reviewing grant applications through their organizations, they prefer to support grants that our Scientific and Medical Advisory Boards have vetted and approved each year, ensuring that these projects receive the necessary resources to make a meaningful impact in the field. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part VI, Section A, Line 4 | The bylaws were amended on 09/24/2025 to update Article II, Section 2.2 to change the maximum number of voting members of the governing body from 9 to 15. |
| Form 990, Part VI, Section B, Line 11b | A copy of Form 990 and all related schedules is provided to the executive committee of the board of directors for review prior to filing with the Internal Revenue Service. |
| Form 990, Part VI, Section B, Line 12c | A conflict of interest disclosures statement is distributed and signed by each board member annually. Conflicts are dealt with on a case-by-case basis. |
| Form 990, Part VI, Section B, Line 15 | In 2025, the DSF Board of Directors established a Compensation Committee whose purpose is to ensure the Foundation's Board of Directors determines the adequacy and reasonableness of the total compensation paid to the Chief Executive Officer and compensation ranges for other senior leadership team members. The committee is responsible for 1.Conducting an annual review of the CEO's performance and total compensation in relation to the marketplace; soliciting board input regarding the CEO's performance against annual performance goals; decide on any changes in the CEO's total compensation; decided on any changes in the CEO's employment agreement, severance, and/or retention agreement, if any are in effect. 2. With respect to Senior Leadership (including the CEO), a compensation market analysis by a neutral third party consultant will be conducted every two years to gather and review in advance appropriate market comparability data on the amount and form of compensation paid for comparable executive positions by other comparable employers, including those organizations with which the Foundation may be competing for executive talent, and to assure that the comparability data gathered and reviewed meets the standard for "Appropriate Data as to Comparability" to qualify for the rebuttable presumption of reasonableness under Internal Revenue Code Section 4958. 3. Before the Board of Directors next meeting or within sixty (60) days after making its determination of reasonableness with respect to the total compensation of all team members (including the CEO) will document in a written report: (A) The terms that were approved and the date approved; (B) The members of the Compensation Committee present during the discussion and those who voted in favor and those who dissented or abstained; (C) The comparability data obtained and relied upon by the Compensation Committee and how the data was obtained; and (D) Any actions taken with respect to the determination by anyone who is otherwise a member of the committee but who had a conflict of interest. The report must be approved by the Compensation Committee as reasonably accurate and complete within a reasonable time thereafter and reported to the Board of Directors. The process described here was last completed in 2025. |
| Form 990, Part VI, Section C, Line 19 | DSF makes its governing documents and conflict of interest policy available to the public upon written request from the president. Financial statements are available for public view on the organization's website. |
| Form 990, Part XI, Line 9 | The organization recorded adjustments of $50,803 for the prior year and $42,582 for the current year to reflect changes in the net present value of long-term grants payable. These adjustments represent the periodic remeasurement of the liability, capturing the effects of the passage of time and any updates to the discount rate, in accordance with generally accepted accounting principles (GAAP). |