Civic Intelligence

Hope for Hypothalamic Hamartomas

990EZ • Fiscal year 2021 • EIN 27-1433464

Jul 01, 2020 to Jun 30, 2021 • Filed on May 09, 2022

Organization ProfileWWW.HOPEFORHH.ORG
PO Box 941Eagle, ID 83616

(506) 999-4822

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

Score unavailable

No value available

Liabilities-to-assets requires both liabilities and assets on this filing.

Source year 2021

Liabilities / Revenue

Score unavailable

No value available

Liabilities-to-revenue requires both liabilities and revenue on this filing.

Source year 2021

Net Margin

89th percentile

55%

Higher net margin than 89% of similar nonprofits.

2021 filings • 501(c)3 • <$500k nonprofits • Source year 2021

Top Officer Pay

84th percentile

$0

Higher top officer pay than 84% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2021 filings • 501(c)3 • <$500k nonprofits • Source year 2021

Asset Growth

63rd percentile

17%

Faster asset growth than 63% of similar nonprofits.

2021 filings • 501(c)3 • <$500k nonprofits • Annualized from 2020 to 2021

Revenue Growth

41st percentile

-6.1%

Faster revenue growth than 41% of similar nonprofits.

2021 filings • 501(c)3 • <$500k nonprofits • Annualized from 2020 to 2021

Balance Sheet
Liabilities / AssetsScore unavailable

Assets

Up

$293,551

Up $41,948 (+17%) from 2020

Net Assets

Up

$293,551

Up $41,948 (+17%) from 2020

Liabilities

-

No earlier filing loaded for comparison.

Revenue And Expenses
Liabilities / RevenueScore unavailableNet Margin89th percentile

Revenue

Down

$76,659

Down $4,941 (-6.1%) from 2020

Expenses

Down

$34,711

Down $90,473 (-72%) from 2020

Net Income

Up

$41,948

Up $85,532 (+196%) from 2020

Historical Trend

Balance Sheet Trend

Asset Growth63rd percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$600K$400K$200K$0Assets 2019: $295,187Liabilities 2019: $0Net Assets 2019: $295,1872019Assets 2020: $251,603Liabilities 2020: $0Net Assets 2020: $251,6032020Assets 2021: $293,551Net Assets 2021: $293,5512021Assets 2022: $354,838Liabilities 2022: $0Net Assets 2022: $354,8382022Assets 2025: $408,627Liabilities 2025: $0Net Assets 2025: $408,6272025

Highlighted filing

2021

Assets$293,551
Liabilities-
Net Assets$293,551
Open 2021 Filing

Operations Trend

Revenue Growth41st percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$200K$100K$0-$100KRevenue 2019: $156,682Expenses 2019: $40,286Net Income 2019: $116,3962019Revenue 2020: $81,600Expenses 2020: $125,184Net Income 2020: -$43,5842020Revenue 2021: $76,659Expenses 2021: $34,711Net Income 2021: $41,9482021Revenue 2022: $146,474Expenses 2022: $85,187Net Income 2022: $61,2872022Revenue 2025: $85,536Expenses 2025: $39,409Net Income 2025: $46,1272025

Highlighted filing

2021

Revenue$76,659
Expenses$34,711
Net Income$41,948
Open 2021 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2020 to Jun 30, 2021
Signed
May 9, 2022
Return Version
2020v4.2
Gross Receipts
$76,659
Mission and Program Overview

Mission

Hope for Hypothalamic Hamartomas provides information, support and community to HH patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and cure.

HopeforHypothalamicHamartomasprovidesinformation,supportandcommunitytoHHpatients,caregiversandhealthcareproviders.Wepromoteresearchintoearlydetection,improvedtreatments,livingwithHHasacomplexmedicalsyndrome,andcure.

Program Services

DescriptionGrantsExpenses
ProgramServiceAccomplishments:HopeforHHfundsresearchforbettertreatmentsandacureforHypothalamicHamartomasyndrome,comorbiditiesandrelatedepilepsiesbyawardingresearchgrantstoqualifiedscientistsandclinicians.HopeforHHalsoawardsgrantstosupporttheprofessionaldevelopment,trainingandmentoringofYoungInvestigators.HopeforHHgrantsfundbasic,clinical,andtranslationalscience.Theresultsextractedfromthisresearchwillseedlargerscalemulti-institutionalinternationalcollaborationsandenablepromisingprojectstoqualifyforlargergovernmentalandotherfundingsources.ResearchareasincludedevelopingfMRIforsurgicalplanningtoimprovetargetingandoutcomes,developinganimalmodelforHH,exomesequencingandgenetics,comparativeeffectivesurgerypilot,YoungInvestigatordevelopment,Symposiumandconferencesupport,andSUDEPresearch.$9,500$10,441
ProgramServiceAccomplishments:ReceivingadiagnosisofHypothalamicHamartomaHHcanbeoverwhelmingandmayleaveapatientandtheircaregiverswithmanyunansweredquestionsandfeelingsofisolation.HopeforHHorganizesabiennialFamilyForumdesignedtobringtogetherdisparatepatientsandcaregiversfromaroundtheglobeforinformation,networking,andcommunity.HopeforHHinvitestheforemostHHexpertstopresentthemostup-to-dateresearchontreatments,comorbidities,bestcarepracticesanddailylivingchallenges.Giventherarityofthediseaseandhowdispersedfamiliesare,formanypatients,thisistheonlytimetheywillmeetanotherHHpatientandcaregiver.HopeforHHalsoawardsfinancialaidfortraveltotheFamilyForumtoensurewide-spreadaccess.Moreover,keyFamilyForuminformationsessionsarevideorecordedsothecontentcanbebroadlydisseminatedpostconferencetoserveaninternationalaudience.InadditiontoFamilyForums,HopeforHHstaffsInformationandReferralservicetoanswerquestions,providereferrals,andoffersupporttonewlydiagnosedpatientsaswellasthoselivingwithandmanagingthediseaseoverthecourseoftheirlifetime.Moreover,HopeforHHmaintainsanin-depthwebsite,weeklyblog,monthlyelectronicnewsletter,dailysocialmediachannels,anddownloadableprintmaterialsonmanytopicsfromQuestionstoaskaNeurosurgeonthroughtoASeizureActionplan-alltoensurethewidespreadavailabilityofinformationandsupportforpatientsandtheirfamilies.PatientspreparingforsurgeryattwoofthecenterswiththelargestvolumeofsurgicalpatientswillalsoreceiveaComfortCarebagfilledwithcomfortitemsforthepatientsandcaregivers.$0$10,371
ProgramServiceAccomplishments:HopeforHHcoordinatesatriennialInternationalResearchSymposiumtoprovideanopportunityforotherwisedisparatelylocatedHHexperts,researchersandclinicianstoexchangeinformation,sharebestpractices,identifygaps,seedcollaborationsanddeveloparoadmaptoimprovediagnosis,treatment,management,andcure.TheinauguralmeetingwasinMarseille,Francein2013andhasbeenconvenedevery3yearssinceincludingLondon2016andWashingtonDC2019.Themeetingbeganwith35HHexpertsandhasgrowntoincludemorethan60HHexpertsandepilepsythoughtleadersacross11countries,25institutionsandmanysubspecialtiesincludingneurosurgery,neurology,endocrinology,radiology,neuropsychiatry,neuropsychology,genetics,basicresearch,andepidemiology.$0$0
Compensation and Service Providers
Top Officer Pay84th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Erica WebsterPresidentPT$0--
Lisa Dunn SoebyVice PresidentPT$0--
Emma KaneBoard MemberPT$0--
Kathy JensenBoard MemberPT$0--
Kimberly RansonTreasurer-$0--
Filing and Contact Details

Filer

Filer Name
Hope for Hypothalamic Hamartomas
EIN
27-1433464
In Care Of
% Lisa Dunn Soeby
Address
PO BOX 941, Eagle, ID 83616

Signing Officer

Name
Kimberly Ranson
Title
Treasurer
Signed
2022-05-09
Supplemental Narrative

Additional Explanations

Part I, line 10

“| Grants And Similar Amounts Paid:, Amount:| Research grants given out, $9500|”

Part I, line 16

“| Other Expenses:, Amount:| Accounting, $2944| Bank Fees, $222| Digital and Web, $9192| Memberships, $275| Insurance, $2629| Database, $3110| Filing fee, $185| Patient aid surgical gift bags, $1179| Professional development, $1520| Research, $941| Miscellaneous supplies, $400|”

Raw XML Appendix161 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt1ProgramServiceAccomplishments:HopeforHHcoordinatesatriennialInternationalResearchSymposiumtoprovideanopportunityforotherwisedisparatelylocatedHHexperts,researchersandclinicianstoexchangeinformation,sharebestpractices,identifygaps,seedcollaborationsanddeveloparoadmaptoimprovediagnosis,treatment,management,andcure.TheinauguralmeetingwasinMarseille,Francein2013andhasbeenconvenedevery3yearssinceincludingLondon2016andWashingtonDC2019.Themeetingbeganwith35HHexpertsandhasgrowntoincludemorethan60HHexpertsandepilepsythoughtleadersacross11countries,25institutionsandmanysubspecialtiesincludingneurosurgery,neurology,endocrinology,radiology,neuropsychiatry,neuropsychology,genetics,basicresearch,andepidemiology.
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0| Grants And Similar Amounts Paid:, Amount:| Research grants given out, $9500|
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1| Other Expenses:, Amount:| Accounting, $2944| Bank Fees, $222| Digital and Web, $9192| Memberships, $275| Insurance, $2629| Database, $3110| Filing fee, $185| Patient aid surgical gift bags, $1179| Professional development, $1520| Research, $941| Miscellaneous supplies, $400|
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ReturnHeader/BuildTS02022-09-23 18:48:47Z
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ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02020-07-01
ReturnHeader/TaxPeriodEndDt02021-06-30
ReturnHeader/TaxYr02020

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2021 • Form 990EZDetailed filing. Detailed filing data is available for this year.

Open filing
Assets
$293,551
Liabilities
-
Net assets
$293,551
Revenue
$76,659
Expenses
$34,711
Net income
$41,948
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$4.09$0.00$4.09$0.86$0.39$0.46
2022Detailed filing. Detailed filing data is available for this year.$3.55$0.00$3.55$1.46$0.85$0.61
2021Detailed filing. Detailed filing data is available for this year.$2.94$2.94$0.77$0.35$0.42
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.52$0.00$2.52$0.82$1.25$0.44
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.95$0.00$2.95$1.57$0.40$1.16
Peer Organizations

Similar nonprofits based on the same Siviq industry and scale cohort. 2021 filings • 501(c)3 • <$500k nonprofits