Civic Intelligence

Congenital Hyperinsulinism International

EIN 20-3068945 • 501(c)3 • Glen Ridge, NJ

Profile

Congenital Hyperinsulinism International (CHI) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism (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.

PO Box 135Glen Ridge, NJ 07028

www.congenitalhi.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

66th percentile

0.15x

Higher debt load relative to assets than 66% of similar nonprofits.

NTEE G • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

78th percentile

0.25x

Higher debt load relative to revenue than 78% of similar nonprofits.

NTEE G • $1M-$5M nonprofits • Source year 2024

Net Margin

54th percentile

12%

Higher net margin than 54% of similar nonprofits.

NTEE G • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

63rd percentile

$114,071

Higher top officer pay than 63% of similar nonprofits.

Top officer pay equals 8.9% of source-year revenue.

NTEE G • $1M-$5M nonprofits • Source year 2024

Asset Growth

77th percentile

21%

Faster asset growth than 77% of similar nonprofits.

NTEE G • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

51st percentile

11%

Faster revenue growth than 51% of similar nonprofits.

NTEE G • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets66th percentile

Assets

Up

$2,173,955

Up $370,632 (+21%) from 2023

Liabilities

Up

$320,502

Up $221,713 (+224%) from 2023

Net Assets

Up

$1,853,453

Up $148,919 (+8.7%) from 2023

Operations
Liabilities / Revenue78th percentileNet Margin54th percentile

Revenue

Up

$1,275,774

Up $125,483 (+11%) from 2023

Expenses

Up

$1,126,855

Up $83,409 (+8.0%) from 2023

Net Income

Up

$148,919

Up $42,074 (+39%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth77th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$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 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

2024

Assets$2,173,955
Liabilities$320,502
Net Assets$1,853,453
Open 2024 Filing

Operations Trend

Revenue Growth51st percentile

Revenue, expenses, and net income by year, with the latest 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 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

2024

Revenue$1,275,774
Expenses$1,126,855
Net Income$148,919
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$2,173,955
Liabilities
$320,502
Net assets
$1,853,453
Revenue
$1,275,774
Expenses
$1,126,855
Net income
$148,919
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
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
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Sep 18, 2025
Return Version
2024v5.2
Gross Receipts
$1,330,299
Mission and Program Overview

Mission

Congenital Hyperinsulinism International (CHI) is dedicated to creating awareness, providing support and the advancement of research to improve the lives of those impacted by congenital hyperinsulinism and other rare hypoglycemia disorders globally. CHI provides education, information and support to families of diagnosed children and adults living with the consequences of 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's mission is to improve the lives of people living with congenital hyperinsulinism (or its consequences),a disorder that causes severe hypoglycemia that can lead to seizures,brain damage,or death, if untreated.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$1,595,342$2,012,346▲ $417,004
Intangible Assets$111,476$88,806▼ $22,670
Pledges and Grants Receivable$64,759$58,885▼ $5,874
Prepaid Expenses and Deferred Charges$31,746$13,918▼ $17,828
Savings and Temporary Cash Investments-$0-
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$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-
Inventories for Sale or Use-$0-
Total Assets$1,803,323$2,173,955▲ $370,632
Other Assets Total-$0-
Liabilities
Accounts Payable and Accrued Expenses$98,789$320,502▲ $221,713
Total Liabilities$98,789$320,502▲ $221,713
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,669,534$1,853,453▲ $183,919
Net Assets With Donor Restrictions$35,000--
Total Net Assets Fund Balance$1,704,534$1,853,453▲ $148,919
Total Liabilities and Net Assets / Fund Balance$1,803,323$2,173,955▲ $370,632
Compensation and Service Providers
Top Officer Pay63rd percentile

Employees

NameTitleFull / Part TimeBaseTotal
Julie RaskinCEOFT$114,071$114,071
Tai PasquiniCROFT$95,000$95,000
Jennifer SchmittCOOFT$90,000$90,000

Board Members and Trustees

NameTitle
Laura SullivanPresident
Julie SheldonVice President
Justyna MontemurroDirector
Pam WilliamsDirector
Trudy WardDirector
Sheila BoseSecretary
Mason SmithTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$260,171
Program Service Revenue
$978,110
Investment Income
$63,858
Other Revenue
$-26,365
All Other Contributions
$120,485
Change in Net Assets
$148,919

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,275,774
Total Revenue per Audited Statements
$1,275,774
Total Revenue per Form 990
$1,275,774
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$581,741
Other Expenses$436,017
Grants and Similar Amounts Paid$109,097
Total Fundraising Expense$74,746
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Current Officers, Directors, Trustees, and Key Employees$244,757$33,907$20,407$299,071
Other Salaries and Wages$187,786-$29,568$217,354
Conferences and Meetings$128,652--$128,652
Grants to Domestic Orgs$76,715--$76,715
Payroll Taxes$54,707$4,289$6,320$65,316
Fees for Services Other$17,238$12,988$2,865$33,091
Foreign Grants$32,382--$32,382
Depreciation Depletion$22,670--$22,670
Travel$17,088--$17,088
All Other Expenses$6,481$1,184$2,000$9,665
Insurance$3,525$1,863$1,931$7,319
Other Expenses$7,038$4,576$10,565$7,038
Office Expenses$3,924$1,035$1,090$6,049
Total Functional Expenses$992,267$59,842$74,746$1,126,855

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$1,126,855
Total Expenses per Audited Statements$1,126,855
Total Expenses per Form 990$1,126,855
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of PennsylvaniaPhilidelphia, PA-Research$66,715

International Summary

Spending
$91,666

International Compliance

Foreign grant records maintained
Yes
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
United KingdomProgramConference00$91,666
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$54,525
Fundraising Gross Income$27,000
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Sugar Soiree$166,686$27,000$6,759$20,241
Total Events$166,686$27,000$54,525$-27,525
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-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
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
Yes
Other officer compensation reviewed
Yes
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, Section B, Line 11B

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

Form 990, Part VI, Section B, Line 12C

“The President of the Board oversees and monitors the adherence to the Conflict of Interest policy. Board members are required to sign and submit the Conflict of Interest policy forms which are reviewed and maintained by the President.”

Form 990, Part VI, Section B, Line 15A

“The Executive Committee reviews current comparative salaries based on national online resources and makes the salary determination based on performance, experience and longevity with CHI.”

Form 990, Part VI, Section C, Line 18

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

Form 990, Part VI, Section C, Line 19

“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
PO BOX 135, GLEN RIDGE, NJ 07028

Signing Officer

Name
Julie Sheldon
Title
Treasurer
Signed
2025-09-18
Discuss with paid preparer
Yes

Organization Details

Formed
2006
Legal Domicile
Nm
Voting Board Members
7
Independent Board Members
7
Employees
9
Volunteers
130

Preparer

Firm
Maureen a Leidl CPA
Address
223 LORRAINE AVE, MONTCLAIR, NJ 07043
Preparer
Maureen A Leidl CPA
Phone
9737832000
Raw XML AppendixShowing 400 of 534 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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IRS990/Desc0CHI supports research and development to better understand, treat, manage, and hopefully cure HI. CHI shares the patient perspective with researchers and members of the biopharmaceutical industry to accelerate the development of patient-centered treatments. CHI is a part of the Million Dollar Bike Ride grant program with the University of Pennsylvanias Center for Orphan Diseases; a pilot research grant is offered each year for an innovative, preclinical or clinical study with the potential to lead to a better HI treatment, a cure for HI, or improvement in the quality of life for those affected by HI. In 2024, CHI was able to award two pilot research grants through this program.In 2024, the CHI Research Staff worked with a lead epidemiologist to publish The Birth Prevalence of Congenital Hyperinsulinism: A Narrative Review of the Epidemiology of a Rare Disease. This publication, published in Hormone Research in Pediatrics, reviews epidemiological data on HI as reported in the literature, identifying the strengths and limitations of each HI prevalence study.CHI conducts the HI Global Registry (HIGR) research project. HIGR provides a convenient online platform for the HI patient community to share their experiences of living with HI. With permission from the patient families, MaxHIGR provides complementary data from the physician perspective. By participating in the HI Global Registry, the patient community helps themselves and researchers better understand HI to advance better treatments, a potential cure, and more timely and accurate diagnoses. A HIGR report is published each year by the CHI staff. Scholars and research may request deidentified data for their research projects. In 2024, CHI continued to lead the Collaborative Research Network (CRN), a project of CHI dedicated to the development of faster and more accurate diagnoses, new evidence-based treatments and cures, standardized clinical guidelines, and increased and improved access to treatment, medication, devices, and supplies. This ambitious project includes working groups focused on different aspects of a prioritized research agenda (PRA) developed by the CRNs members including 60 leading researchers, clinicians, and patient advocates from 17 countries The CRN members have been focused on the top priorities identified in the PRA: Newborn Screening (Diagnose all babies with congenital hyperinsulinism in a timely manner); Glucose as a Vital Sign (Increase awareness and timely diagnosis of HI); Care Guidelines (Create and disseminate continually evolving global care guidelines); Natural History (Build a robust registry that collects patient-reported, physician, and real-world data to provide a foundation for HI natural history); Continuous Glucose Monitoring (Create principles for Draft guidelines on CGM use in HI patients). Since the launch of the CRN in 2020, the CRN members have published a total of 194 articles on congenital hyperinsulinism covering a wide range of topics including genetics, treatment, disease management, monitoring and technology, screening and diagnostics, clinical guidelines, education, patient experience, quality of life, policy, and access to care. In 2024, the CRN published an Advocacy Statement and List of Essential Medical Care, Medication, Supplies, and Services for people with congenital hyperinsulinism (HI). The CRN also published "Continuous glucose monitoring for children and young people with hyperinsulinism: a practical guide for families & professionals and CGM: a tool to support HI families". These guides are a collaboration of work by HI experts around the world, including many who are part of the CHI CRN and CHI staff. Patient and caregiver representatives of the CHI CRN provided the patient perspective. CHI continues to support the Open Hyperinsulinism Genes Program in partnership with the University of Exeter in the UK. This program is the first point-of-need international genetic testing service for HI and is also accelerating
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IRS990/MissionDesc0Congenital Hyperinsulinism International (CHI) is a nonprofit 501(c)(3) corporation dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism (HI). HI is a life-threatening genetic disorder that causes severe low blood sugar (hypoglycemia) in infants and children, though in 50% of patients, the genetic cause is unknown. For those with HI, the beta cells of the pancreas secrete too much insulin in an unregulated manner. Excess insulin causes hypoglycemia. Prolonged or severe hypoglycemia can cause seizures, permanent brain damage, or even death if left untreated. A good prognosis is far more likely with a timely diagnosis and proper management.
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IRS990/ProgSrvcAccomActy2Grp/Desc0CHI increases awareness of HI to improve timely diagnosis and guideline-driven management of HI to the public and medical personnel who have a direct opportunity to detect it, in order to decrease adverse neurological outcomes and death. To that end, CHI spreads awareness of HI with ongoing campaigns on social media, the CHI website and blog, CHI posters in 25 languages, CHI brochures, through direct mail and email, and at meetings and conferences. CHI provides educational resources and holds conferences and meetings on HI for patients, families, medical professionals, school personnel, and rare disease industry members. To date, CHI has held 35 family and research meetings and conferences with presentations from academic researchers, members of advocacy organizations, HI patients and families, and biotechnology companies.
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IRS990/ProgSrvcAccomActy3Grp/Desc0CHI advocates on behalf of HI families all over the world for access to quality treatment, medication, and supplies. CHI provides opportunities for affected families to emotionally support each other because the home care medical management of HI is often complicated and difficult. CHI offers online forums, and CHI staff and volunteers are available by telephone, virtually and in-person for support. CHI establishes funds at hospitals to support families from out of town who must travel to centers of excellence for patient care.
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