Civic Intelligence

Hope for Hypothalamic Hamartomas

990EZ • Fiscal year 2022 • EIN 27-1433464

Jul 01, 2021 to Jun 30, 2022 • Filed on Apr 28, 2023

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

58th percentile

0.00x

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

2022 filings • 501(c)3 • <$500k nonprofits • Source year 2022

Liabilities / Revenue

58th percentile

0.00x

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

2022 filings • 501(c)3 • <$500k nonprofits • Source year 2022

Net Margin

86th percentile

42%

Higher net margin than 86% of similar nonprofits.

2022 filings • 501(c)3 • <$500k nonprofits • Source year 2022

Top Officer Pay

78th percentile

$0

Higher top officer pay than 78% of similar nonprofits.

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

2022 filings • 501(c)3 • <$500k nonprofits • Source year 2022

Asset Growth

72nd percentile

21%

Faster asset growth than 72% of similar nonprofits.

2022 filings • 501(c)3 • <$500k nonprofits • Annualized from 2021 to 2022

Revenue Growth

82nd percentile

91%

Faster revenue growth than 82% of similar nonprofits.

2022 filings • 501(c)3 • <$500k nonprofits • Annualized from 2021 to 2022

Balance Sheet
Liabilities / Assets58th percentile

Assets

Up

$354,838

Up $61,287 (+21%) from 2021

Net Assets

Up

$354,838

Up $61,287 (+21%) from 2021

Liabilities

$0

No earlier filing loaded for comparison.

Revenue And Expenses
Liabilities / Revenue58th percentileNet Margin86th percentile

Revenue

Up

$146,474

Up $69,815 (+91%) from 2021

Expenses

Up

$85,187

Up $50,476 (+145%) from 2021

Net Income

Up

$61,287

Up $19,339 (+46%) from 2021

Historical Trend

Balance Sheet Trend

Asset Growth72nd 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

2022

Assets$354,838
Liabilities$0
Net Assets$354,838
Open 2022 Filing

Operations Trend

Revenue Growth82nd 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

2022

Revenue$146,474
Expenses$85,187
Net Income$61,287
Open 2022 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2021 to Jun 30, 2022
Signed
Apr 28, 2023
Return Version
2021v4.0
Gross Receipts
$146,474
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
Program Service Accomplishments: 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.$62,060$63,131
Program Service Accomplishments: 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$5,413
Program Service Accomplishments: 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$633
Compensation and Service Providers
Top Officer Pay78th 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
2023-04-28
Supplemental Narrative

Additional Explanations

Part I, line 10

“| Grants And Similar Amounts Paid:, Amount:| Mouse Model Research Grant University of Illinois Urbana-Champaign 506 S. Wright Street Urbana IL 61801 Development of a mouse model for Hypothalamic Hamartoma research, $12060| Genomic Profiling Research Grant Baylor College of Medicine One Baylor Plaza Houston TX 77030-3411 Genomic profiling of Hypothalamic Hamartoma derived samples obtained during magnetic resonance-guided laser interstitial thermal therapy research., $50000|”

Part I, line 16

“| Other Expenses:, Amount:| Accounting, $838| Bank Fees, $352| Digital and Web, $8421| Membership, $245| Database, $2824| State Filing fees, $669| Patient surgical bags, $393| Research, $1071| Misc supplies, $478| Patient Conference, $5020| International Symposium, $632|”

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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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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0| Grants And Similar Amounts Paid:, Amount:| Mouse Model Research Grant University of Illinois Urbana-Champaign 506 S. Wright Street Urbana IL 61801 Development of a mouse model for Hypothalamic Hamartoma research, $12060| Genomic Profiling Research Grant Baylor College of Medicine One Baylor Plaza Houston TX 77030-3411 Genomic profiling of Hypothalamic Hamartoma derived samples obtained during magnetic resonance-guided laser interstitial thermal therapy research., $50000|
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1| Other Expenses:, Amount:| Accounting, $838| Bank Fees, $352| Digital and Web, $8421| Membership, $245| Database, $2824| State Filing fees, $669| Patient surgical bags, $393| Research, $1071| Misc supplies, $478| Patient Conference, $5020| International Symposium, $632|
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Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2022 • Form 990EZDetailed filing. Detailed filing data is available for this year.

Open filing
Assets
$354,838
Liabilities
$0
Net assets
$354,838
Revenue
$146,474
Expenses
$85,187
Net income
$61,287
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