Civic Intelligence

Congenital Hyperinsulinism International

990 • Fiscal year 2014 • EIN 20-3068945

Jan 01, 2014 to Dec 31, 2014 • Filed on Jul 22, 2015

Organization Profilewww.congenitalhi.org

View Organization Page

5 Sierra Blanca RoadCedar Crest, NM 87008

(973) 566-0334

Siviq Scores

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

Liabilities / Assets

60th percentile

0.00x

Higher debt load relative to assets than 60% of similar nonprofits.

2014 filings • NTEE G • <$500k nonprofits • Source year 2014

Liabilities / Revenue

60th percentile

0.00x

Higher debt load relative to revenue than 60% of similar nonprofits.

2014 filings • NTEE G • <$500k nonprofits • Source year 2014

Net Margin

88th percentile

57%

Higher net margin than 88% of similar nonprofits.

2014 filings • NTEE G • <$500k nonprofits • Source year 2014

Top Officer Pay

87th percentile

$27,347

Higher top officer pay than 87% of similar nonprofits.

Top officer pay equals 12.6% of source-year revenue.

2014 filings • NTEE G • <$500k nonprofits • Source year 2014

Asset Growth

85th percentile

96%

Faster asset growth than 85% of similar nonprofits.

2014 filings • NTEE G • <$500k nonprofits • Annualized from 2013 to 2014

Revenue Growth

88th percentile

94%

Faster revenue growth than 88% of similar nonprofits.

2014 filings • NTEE G • <$500k nonprofits • Annualized from 2013 to 2014

Balance Sheet
Liabilities / Assets60th percentile

Assets

Flat

$254,302

Flat from 2014

Net Assets

Flat

$254,265

Flat from 2014

Liabilities

Flat

$37

Flat from 2014

Revenue And Expenses
Liabilities / Revenue60th percentileNet Margin88th percentile

Revenue

Flat

$217,087

Flat from 2014

Expenses

Flat

$92,691

Flat from 2014

Net Income

Flat

$124,396

Flat from 2014

Historical Trend

Balance Sheet Trend

Asset Growth85th percentile

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

$3.0M$2.0M$1.0M$0Assets 2011: $74,353Liabilities 2011: $02011Assets 2012: $95,114Liabilities 2012: $02012Assets 2013: $129,869Net Assets 2013: $129,8692013Assets 2014: $254,302Liabilities 2014: $37Net Assets 2014: $254,2652014Assets 2014: $254,302Liabilities 2014: $37Net Assets 2014: $254,2652014Assets 2015: $344,440Liabilities 2015: $0Net Assets 2015: $344,4402015Assets 2016: $445,585Liabilities 2016: $0Net Assets 2016: $445,5852016Assets 2017: $653,182Liabilities 2017: $16,500Net Assets 2017: $636,6822017Assets 2018: $618,444Liabilities 2018: $8,234Net Assets 2018: $610,2102018Assets 2019: $593,116Liabilities 2019: $10,718Net Assets 2019: $582,3982019Assets 2020: $1,097,548Liabilities 2020: $275,040Net Assets 2020: $822,5082020Assets 2021: $1,177,701Liabilities 2021: $8,582Net Assets 2021: $1,169,1192021Assets 2022: $1,644,315Liabilities 2022: $46,626Net Assets 2022: $1,597,6892022Assets 2023: $1,803,323Liabilities 2023: $98,789Net Assets 2023: $1,704,5342023Assets 2024: $2,173,955Liabilities 2024: $320,502Net Assets 2024: $1,853,4532024

Highlighted filing

2014

Assets$254,302
Liabilities$37
Net Assets$254,265
Open 2014 Filing

Operations Trend

Revenue Growth88th percentile

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

$1.5M$1.0M$500K$0-$500KRevenue 2011: $43,554Expenses 2011: $40,415Net Income 2011: $3,1392011Revenue 2012: $69,508Expenses 2012: $50,250Net Income 2012: $19,2582012Revenue 2013: $112,094Expenses 2013: $77,339Net Income 2013: $34,7552013Revenue 2014: $217,087Expenses 2014: $92,691Net Income 2014: $124,3962014Revenue 2014: $217,087Expenses 2014: $92,691Net Income 2014: $124,3962014Revenue 2015: $219,950Expenses 2015: $129,775Net Income 2015: $90,1752015Revenue 2016: $305,957Expenses 2016: $204,812Net Income 2016: $101,1452016Revenue 2017: $471,505Expenses 2017: $280,408Net Income 2017: $191,0972017Revenue 2018: $355,579Expenses 2018: $382,051Net Income 2018: -$26,4722018Revenue 2019: $466,689Expenses 2019: $494,501Net Income 2019: -$27,8122019Revenue 2020: $707,807Expenses 2020: $467,697Net Income 2020: $240,1102020Revenue 2021: $888,439Expenses 2021: $541,828Net Income 2021: $346,6112021Revenue 2022: $1,262,625Expenses 2022: $834,055Net Income 2022: $428,5702022Revenue 2023: $1,150,291Expenses 2023: $1,043,446Net Income 2023: $106,8452023Revenue 2024: $1,275,774Expenses 2024: $1,126,855Net Income 2024: $148,9192024

Highlighted filing

2014

Revenue$217,087
Expenses$92,691
Net Income$124,396
Open 2014 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2014 to Dec 31, 2014
Signed
Jul 22, 2015
Return Version
2014v5.0
Gross Receipts
$257,542
Mission and Program Overview

Mission

CHI is dedicated to improving the lives of babies, children, and adults affected by HI. CHI provides education, information and support to families of diagnosed children and adults living with the condition. CHI works to promote knowledge and awareness of the disorder as it leads to timely diagnosis and decreases death and brain damage, better care and better neurological outcomes. CHI supports research and development for a better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.

Congenital Hyperinsulinism International (CHI) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism. CHI provides education, information and support to families of diagnosed children and adults living with the condition. CHI works to promote knowledge and awareness of the disorder as it leads to timely diagnosis, and decreases death and brain damage, better care and neurological outcomes. Undiagnosed hyperinsulinism leads to brain damage and death. CHI supports research and development for better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$129,869$254,302▲ $124,433
Savings and Temporary Cash Investments-$0-
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Land, Buildings, and Equipment, Net-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Prepaid Expenses and Deferred Charges-$0-
Total Assets$129,869$254,302▲ $124,433
Other Assets Total-$0-
Liabilities
Other Liabilities-$37-
Total Liabilities$0$37▲ $37
Net Assets / Fund Balance
Unrestricted Net Assets$129,869$254,265▲ $124,396
Total Net Assets Fund Balance$129,869$254,265▲ $124,396
Total Liabilities and Net Assets / Fund Balance$129,869$254,302▲ $124,433
Compensation and Service Providers
Top Officer Pay87th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Julie RaskinExecutive DirectorFT$27,347$27,347

Board Members and Trustees

NameTitle
Matthew M HopkinsPresident
Isabel CalderonVice President
Davelyn HoodDirector
Jeffrey R HartDirector
Margaret MaherDirector
Patricia CymermanDirector
Randy a HartDirector
Sarah-charlotte BrownDirector
Pam WilliamsSecretary
Mason SmithTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$41,537
Program Service Revenue
$36,590
Investment Income
$0
Other Revenue
$138,960
Change in Net Assets
$124,396
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$41,395
Salaries, Compensation, and Employee Benefits$30,296
Grants and Similar Amounts Paid$21,000
Total Fundraising Expense$2,331
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Conferences and Meetings$31,957--$31,957
Current Officers, Directors, Trustees, and Key Employees$23,519$2,188$1,640$27,347
Grants to Domestic Orgs$21,000--$21,000
Payroll Taxes$2,536$236$177$2,949
Office Expenses$1,140$106$79$1,325
Fees for Services Accounting-$1,251-$1,251
All Other Expenses$714$66$50$830
Other Expenses$630$59$43$732
Total Functional Expenses$83,908$6,452$2,331$92,691
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Orphan Disease Ctr Penn MedPhiladelphia, PA-Research$21,000

International Summary

Spending
$11,630

International Compliance

Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Dublin, IrelandConferenceEducation00$10,600
Milan, ItalyConferenceTranslation00$1,030
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$179,415
Fundraising Direct Expenses$40,455
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Sugar Soiree$162,199$162,199$4,118$158,081
Rare Disease Day Event$17,190$17,190$260$16,930
Total Events$179,389$179,389$40,455$138,934
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Payroll Liabilities$37
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
No
Backup withholding compliance
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et

“Randy and Jeffrey Hart are married.”

Form 990, Part VI, Line 11B: Form 990 Review Process

“A copy of the Form 990 is provided to the President and Treasurer of the Board of Trustees for review prior to filing.”

Form 990, Part VI, Line 18: Explanation of Other Means Forms Available For Public Inspection

“The Form 990 is made available to the public upon request.”

Form 990, Part VI, Line 19: Other Organization Documents Publicly Available

“The Form 990 is made available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
Congenital Hyperinsulinism International
EIN
20-3068945
Phone
9735660334
Address
5 SIERRA BLANCA ROAD, CEDAR CREST, NM 87008

Signing Officer

Name
Mason Smith
Title
Treasurer
Signed
2015-07-22
Discuss with paid preparer
Yes

Organization Details

Legal Domicile
Nm
Voting Board Members
10
Independent Board Members
9
Employees
1
Volunteers
102

Preparer

Firm
Maureen a Leidl CPA
Address
223 LORRAINE AVE, MONTCLAIR, NJ 07043-1948
Preparer
Maureen A Leidl CPA
Phone
9737832000
Supplemental Narrative

Additional Explanations

Form 990, Part III, Line 4D: Other Program Services Description

“OTHER PROGRAM SERVICES 4: CHI advocates on behalf of families living around the world with congenital hyperinsulinism and supports them in their quest to access excellent medical care, services, medication, and supplies they need to live a healthy life. CHI provides emotional support to families for whom the demands of the disorder take an emotional toll through on-line forums, by telephone and by visiting families. CHI is establishing funds at hospitals to support families from out of town who must travel for patient care. $8,367”

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IRS990/MissionDesc0Congenital Hyperinsulinism International (CHI) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism. CHI provides education, information and support to families of diagnosed children and adults living with the condition. CHI works to promote knowledge and awareness of the disorder as it leads to timely diagnosis, and decreases death and brain damage, better care and neurological outcomes. Undiagnosed hyperinsulinism leads to brain damage and death. CHI supports research and development for better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.
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IRS990/ProgSrvcAccomActy2Grp/Desc0CHI increases awareness of congenital hyperinsulinism in order to improve timely diagnosis, especially among medical personnel who have a direct opportunity to detect it, in order to decrease adverse neurological outcomes and death. CHI works with volunteers around the world to spread awareness of the condition, distributes brochures to medical professionals, provides information on the CHI website about the dangers of prolonged hypoglycemia, holds events for the general public, and works with endocrinologists to improve standards of care and early detection of hyperinsulinism. $13,217
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IRS990/ProgSrvcAccomActy3Grp/Desc0CHI supports research and development to better understand, treat, manage and hopefully cure congenital hyperinsulinism. CHI shares the patient perspective with researchers, members of the pharmaceutical industry to encourage patient-centered treatments. CHI has created a grant program with the Orphan Disease Center of Penn Medicine (University of Pennsylvania). The selective grant is administered by the University of Pennsylvania and the funds support research for better treatments and a cure for hyperinsulinism. CHI is working to develop a patient registry that will include information that will foster research and knowledge of natural history of hyperinsulinism patients. $24,650
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Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2014 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$254,302
Liabilities
$37
Net assets
$254,265
Revenue
$217,087
Expenses
$92,691
Net income
$124,396
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.17$0.32$1.85$1.28$1.13$0.15
2023Summary only. Only limited summary data is available for this year.$1.80$0.10$1.70$1.15$1.04$0.11
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.64$0.05$1.60$1.26$0.83$0.43
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.18$0.01$1.17$0.89$0.54$0.35
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.10$0.28$0.82$0.71$0.47$0.24
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.59$0.01$0.58$0.47$0.49$0.03
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.62$0.01$0.61$0.36$0.38$0.03
2017Summary only. Only limited summary data is available for this year.$0.65$0.02$0.64$0.47$0.28$0.19
2016Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.45$0.00$0.45$0.31$0.20$0.10
2015Summary only. Only limited summary data is available for this year.$0.34$0.00$0.34$0.22$0.13$0.09
2014Detailed filing. Detailed filing data is available for this year.$0.25$0.00$0.25$0.22$0.09$0.12
2014Summary only. Only limited summary data is available for this year.$0.25$0.00$0.25$0.22$0.09$0.12
2013Detailed filing. Detailed filing data is available for this year.$0.13$0.13$0.11$0.08$0.03
2012Summary only. Only limited summary data is available for this year.$0.10$0.00$0.07$0.05$0.02
2011Summary only. Only limited summary data is available for this year.$0.07$0.00$0.04$0.04$0.00