Civic Intelligence

Hope for Hypothalamic Hamartomas

990EZ • Fiscal year 2020 • EIN 27-1433464

Jul 01, 2019 to Jun 30, 2020 • Filed on May 13, 2021

Organization Profilewww.hopeforhh.org
PO Box 721Wadell, AZ 85355

(506) 999-4822

Siviq Scores

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

Liabilities / Assets

55th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2020 filings • 501(c)3 • <$500k nonprofits • Source year 2020

Liabilities / Revenue

55th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2020 filings • 501(c)3 • <$500k nonprofits • Source year 2020

Net Margin

12th percentile

-53%

Higher net margin than 12% of similar nonprofits.

2020 filings • 501(c)3 • <$500k nonprofits • Source year 2020

Top Officer Pay

76th percentile

$0

Higher top officer pay than 76% of similar nonprofits.

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

2020 filings • 501(c)3 • <$500k nonprofits • Source year 2020

Asset Growth

23rd percentile

-15%

Faster asset growth than 23% of similar nonprofits.

2020 filings • 501(c)3 • <$500k nonprofits • Annualized from 2019 to 2020

Revenue Growth

23rd percentile

-48%

Faster revenue growth than 23% of similar nonprofits.

2020 filings • 501(c)3 • <$500k nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets55th percentile

Assets

Down

$251,603

Down $43,584 (-15%) from 2019

Net Assets

Down

$251,603

Down $43,584 (-15%) from 2019

Liabilities

Flat

$0

Flat from 2019

Revenue And Expenses
Liabilities / Revenue55th percentileNet Margin12th percentile

Revenue

Down

$81,600

Down $75,082 (-48%) from 2019

Expenses

Up

$125,184

Up $84,898 (+211%) from 2019

Net Income

Down

-$43,584

Down $159,980 (-137%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth23rd 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

2020

Assets$251,603
Liabilities$0
Net Assets$251,603
Open 2020 Filing

Operations Trend

Revenue Growth23rd 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

2020

Revenue$81,600
Expenses$125,184
Net Income-$43,584
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2019 to Jun 30, 2020
Signed
May 13, 2021
Return Version
2019v5.2
Gross Receipts
$81,600
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.

Program Services

DescriptionGrantsExpenses
Hope for HH coordinates a triennial International Research Symposium to provide an opportunity for otherwise disparately located HH experts, researchers and clinicians to exchange information, share best practices, identify gaps, seed collaborations and develop a roadmap to improve diagnosis, treatment, management, and cure. The inaugural meeting was in Marseille, France in 2013 and has been convened every 3 years since including London (2016) and Washington DC (2019). The meeting began with 35 HH experts and has grown to include more than 60 HH experts and epilepsy thought leaders across 11 countries, 25 institutions and many subspecialties including neurosurgery, neurology, endocrinology, radiology, neuropsychiatry, neuropsychology, genetics, basic research, and epidemiology.$0$80,595
Receiving a diagnosis of Hypothalamic Hamartoma (HH) can be overwhelming and may leave a patient and their caregivers with many unanswered questions and feelings of isolation. Hope for HH organizes a biennial Family Forum designed to bring together disparate patients and caregivers from around the globe for information, networking, and community. Hope for HH invites the foremost HH experts to present the most up-to-date research on treatments, comorbidities, best care practices and daily living challenges. Given the rarity of the disease and how dispersed families are, for many patients, this is the only time they will meet another HH patient and caregiver. Hope for HH also awards financial aid for travel to the Family Forum to ensure wide-spread access. Moreover, key Family Forum information sessions are videorecorded so the content can be broadly disseminated post conference to serve an international audience. In addition to Family Forums, Hope for HH staffs Information and Referral service to answer questions, provide referrals, and offer support to newly diagnosed patients as well as those living with and managing the disease over the course of their lifetime. Moreover, Hope for HH maintains an in-depth website, weekly blog, monthly electronic newsletter, daily social media channels, and downloadable print materials on many topics from Questions to ask a Neurosurgeon through to A Seizure Action plan - all to ensure the widespread availability of information and support for patients and their families. Patients preparing for surgery at two of the centers with the largest volume of surgical patients will also receive a Comfort Care bag filled with comfort items for the patients and caregivers.$0$10,248
Hope for HH funds research for better treatments and a cure for Hypothalamic Hamartoma syndrome, comorbidities and related epilepsies by awarding research grants to qualified scientists and clinicians. Hope for HH also awards grants to support the professional development, training and mentoring of Young Investigators. Hope for HH grants fund basic, clinical, and translational science. The results extracted from this research will seed larger scale multi-institutional international collaborations and enable promising projects to qualify for larger governmental and other funding sources. Research areas include developing FMRI for surgical planning to improve targeting and outcomes, developing animal model for HH, exome sequencing and genetics, comparative effective surgery pilot, Young Investigator development, Symposium and conference support, and SUDEP research.$0$10,042
Compensation and Service Providers
Top Officer Pay76th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Lisa Dunn SoebyVice PresidentPT$0--
Erica WebsterPresidentPT$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
Phone
5069994822
Address
PO Box 721, Wadell, AZ 85355

Signing Officer

Name
Kimberly Ranson
Title
Treasurer
Phone
5069994822
Signed
2021-05-13

Preparer

Firm
Taksey Neff & Associates LLC
Address
2 Research Place Suite 310, Rockville, MD 20850
Preparer
Edward Neff
Phone
3012941100
Supplemental Narrative

Additional Explanations

Form 990-EZ, Part I, Line 4 - Other Investment Income

“Description: Investment Interest. Amount: 46.”

Form 990-EZ, Part I, Line 16 - Other Expenses

“Description: Accounting. Amount: 4,439. Description: Bank Fee. Amount: 299. Description: Legal. Amount: 497. Description: Digital & web. Amount: 5,713. Description: Memberships. Amount: 235. Description: Insurance. Amount: 1,217. Description: Database. Amount: 2,231. Description: Filing fee. Amount: 185. Description: Patient aid surgical gift bags. Amount: 2,304. Description: Professional conferences. Amount: 92,459. Description: Professional development. Amount: 4,145. Description: Research. Amount: 947. Description: Miscellaneous supplies. Amount: 142. Description: Medical Advisory Board dining. Amount: 678. Description: Travel . Amount: 1,723. Total to Form 990-EZ, line 16: 117,214.”

Raw XML Appendix171 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/DescriptionProgramSrvcAccomTxt1Hope for HH coordinates a triennial International Research Symposium to provide an opportunity for otherwise disparately located HH experts, researchers and clinicians to exchange information, share best practices, identify gaps, seed collaborations and develop a roadmap to improve diagnosis, treatment, management, and cure. The inaugural meeting was in Marseille, France in 2013 and has been convened every 3 years since including London (2016) and Washington DC (2019). The meeting began with 35 HH experts and has grown to include more than 60 HH experts and epilepsy thought leaders across 11 countries, 25 institutions and many subspecialties including neurosurgery, neurology, endocrinology, radiology, neuropsychiatry, neuropsychology, genetics, basic research, and epidemiology.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt2Hope for HH funds research for better treatments and a cure for Hypothalamic Hamartoma syndrome, comorbidities and related epilepsies by awarding research grants to qualified scientists and clinicians. Hope for HH also awards grants to support the professional development, training and mentoring of Young Investigators. Hope for HH grants fund basic, clinical, and translational science. The results extracted from this research will seed larger scale multi-institutional international collaborations and enable promising projects to qualify for larger governmental and other funding sources. Research areas include developing FMRI for surgical planning to improve targeting and outcomes, developing animal model for HH, exome sequencing and genetics, comparative effective surgery pilot, Young Investigator development, Symposium and conference support, and SUDEP research.
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Description: Accounting. Amount: 4,439. Description: Bank Fee. Amount: 299. Description: Legal. Amount: 497. Description: Digital & web. Amount: 5,713. Description: Memberships. Amount: 235. Description: Insurance. Amount: 1,217. Description: Database. Amount: 2,231. Description: Filing fee. Amount: 185. Description: Patient aid surgical gift bags. Amount: 2,304. Description: Professional conferences. Amount: 92,459. Description: Professional development. Amount: 4,145. Description: Research. Amount: 947. Description: Miscellaneous supplies. Amount: 142. Description: Medical Advisory Board dining. Amount: 678. Description: Travel . Amount: 1,723. Total to Form 990-EZ, line 16: 117,214.
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TransferPrsnlBnftContractsDecl/DeclarationDesc0The organization did not, during the year, receive any funds, directly,or indirectly, to pay premiums on a personal benefit contract.The organization, did not, during the year, pay any premiums, directly,or indirectly, on a personal benefit contract.
ReturnHeader/BuildTS02022-09-23 18:48:47Z
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ReturnHeader/PreparerPersonGrp/PreparationDt02021-05-13
ReturnHeader/PreparerPersonGrp/PreparerPersonNm0Edward Neff
ReturnHeader/ReturnTs02021-05-13T09:48:47-05:00
ReturnHeader/ReturnTypeCd0990EZ
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ReturnHeader/TaxPeriodEndDt02020-06-30
ReturnHeader/TaxYr02019

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2020 • Form 990EZDetailed filing. Detailed filing data is available for this year.

Open filing
Assets
$251,603
Liabilities
$0
Net assets
$251,603
Revenue
$81,600
Expenses
$125,184
Net income
-$43,584
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
2020Detailed filing. Detailed filing data is available for this year.$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