Liabilities / Assets
57th percentile
Tied with the lowest-debt nonprofits in its peer group.
Hope for Hypothalamic Hamartomas
990EZ • Fiscal year 2019 • EIN 27-1433464
Siviq Scores
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
0.00x
Liabilities / Revenue
57th percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
96th percentile
Higher net margin than 96% of similar nonprofits.
Top Officer Pay
77th percentile
Higher top officer pay than 77% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
Score unavailable
No earlier valid filing was available within the previous three public years.
Revenue Growth
Score unavailable
No earlier valid filing was available within the previous three public years.
Balance Sheet
Assets
$295,187
No earlier filing loaded for comparison.
Net Assets
$295,187
No earlier filing loaded for comparison.
Liabilities
$0
No earlier filing loaded for comparison.
Revenue And Expenses
Revenue
$156,682
No earlier filing loaded for comparison.
Expenses
$40,286
No earlier filing loaded for comparison.
Net Income
$116,396
No earlier filing loaded for comparison.
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jul 1, 2018 to Jun 30, 2019
- Signed
- Nov 14, 2019
- Return Version
- 2018v3.1
- Gross Receipts
- $156,682
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
| Description | Grants | Expenses |
|---|---|---|
| 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 | $17,629 |
| 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 | $10,611 |
| 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 | $7,426 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Ilene Miller | President | FT | $0 | - | - |
| Lisa Dunn Soeby | Vice President | PT | $0 | - | - |
| Erica Webster | Secretary | PT | $0 | - | - |
| Emma Kane | Board Member | - | $0 | - | - |
| Kathy Jensen | Board Member | PT | $0 | - | - |
| Kimberly Ranson | Treasurer | - | $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
- 2019-11-14
- Discuss with paid preparer
- Yes
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: 36.”
Form 990-EZ, Part I, Line 16 - Other Expenses
“Description: Legal. Amount: 1,385. Description: Digital & web. Amount: 5,255. Description: Memberships. Amount: 285. Description: Insurance. Amount: 1,070. Description: Database. Amount: 3,040. Description: Filing fee. Amount: 310. Description: Supplies. Amount: 481. Description: Patient webinar digital ed. Amount: 129. Description: Patient aid surgical gift bags. Amount: 2,188. Description: Professional conferences. Amount: 17,121. Description: Research. Amount: 6,796. Description: Medical Advisory Board dining. Amount: 2,027. Total to Form 990-EZ, line 16: 40,087.”
Raw XML Appendix176 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/DescriptionProgramSrvcAccomTxt | 2 | 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. |
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| ReturnHeader/BuildTS | 0 | 2020-01-14 16:20:31Z |
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Document Assets
No mirrored PDF or thumbnail assets are attached yet.
Filings
Displayed year
2019 • Form 990EZDetailed filing. Detailed filing data is available for this year.
- Assets
- $295,187
- Liabilities
- $0
- Net assets
- $295,187
- Revenue
- $156,682
- Expenses
- $40,286
- Net income
- $116,396