New Jersey · Nonprofit
CONGENITAL HYPERINSULINISM INTERNATIONAL
CONGENITAL HYPERINSULINISM INTERNATIONAL (New Jersey) receives grants from 25 organizations whose IRS filings report $1,127,372 to it, the largest being Silicon Valley Community Foundation ($615,000). 12 of them have funded it in more than one year, and 65% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $1.3M
- Funders on record
- 25
- Grants received
- $1.1M
- Net assets
- $1.9M
What Congenital Hyperinsulinism International does
Mission
Congenital 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.
As stated on its FY2024 Form 990.
Programs
CHI 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…
$571,274 spent58% of program spendingCHI 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.
$226,850 spent23% of program spendingCHI 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.
$194,143 spent20% of program spending
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $992,267.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2019 to 2020, from $593k to $1.1M (+85%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2021 4%. Grants only. Government contracts and fees sit inside program revenue.
20% of CONGENITAL HYPERINSULINISM INTERNATIONAL’s revenue is contributions — about as donation-reliant as the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Julie Raskin
CEO
As listed on its FY2024 Form 990.
Who funds it, year by year
2017 → 2023: the base narrowed from 6 funders to 4 funders, grant income rose $18k → $29k.
5 of 25 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 65% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of CONGENITAL HYPERINSULINISM INTERNATIONAL’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
CONGENITAL HYPERINSULINISM INTERNATIONAL leans on a few funders — its largest provides 55% of grant income and the top three 70%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
77% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund CONGENITAL HYPERINSULINISM INTERNATIONAL.
Largest funder’s share by year: 2017 54% · 2018 50% · 2019 38% · 2020 93% · 2021 48% · 2022 80% · 2023 52% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
33% of CONGENITAL HYPERINSULINISM INTERNATIONAL's funders are still giving 3 years after their first grant; 48% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
65% of CONGENITAL HYPERINSULINISM INTERNATIONAL's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $394k that is directly attributable, 63% of it comes from New Jersey funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $734k arriving through sponsors registered in 5 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
CONGENITAL HYPERINSULINISM INTERNATIONAL holds deeper cash reserves than three-quarters of the 8,121 health nonprofits its size.
this organization peer median middle 50% of peers· 8,121 health nonprofits $1M–$10M, FY2024
Organizations like CONGENITAL HYPERINSULINISM INTERNATIONAL
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In New Jersey
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
88% of spending goes to programs.
Governance
Public support
88%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 12 states
Screen this organization
A dated, signed PDF of the compliance screen for CONGENITAL HYPERINSULINISM INTERNATIONAL: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds CONGENITAL HYPERINSULINISM INTERNATIONAL?
- CONGENITAL HYPERINSULINISM INTERNATIONAL (New Jersey) receives grants from 25 organizations whose IRS filings report $1,127,372 to it, the largest being Silicon Valley Community Foundation ($615,000). 12 of them have funded it in more than one year, and 65% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does CONGENITAL HYPERINSULINISM INTERNATIONAL have?
- IRS filings report 25 organizations giving $1,127,372 in grants to CONGENITAL HYPERINSULINISM INTERNATIONAL, 12 of which have funded it in more than one year.
- Who is the largest funder of CONGENITAL HYPERINSULINISM INTERNATIONAL?
- Silicon Valley Community Foundation is the largest funder on record, with $615,000 in grants. The full list of funders is on this page.
- How can an organization like CONGENITAL HYPERINSULINISM INTERNATIONAL find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in New Jersey. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 25 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing