Shwachman-Diamond Syndrome Alliance Inc logo

Shwachman-Diamond Syndrome Alliance Inc

Public charity · Grantmaker Woburn, MA EIN: 84-4654297 Website

Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a US-based nonprofit organization serving the global SDS community to improve and save the lives of people affected by SDS by focusing on research and therapy development.

Key facts about Shwachman-Diamond Syndrome Alliance Inc

EIN
84-4654297
Latest 990 filing
Form 990, 2024
Total assets
$575,441

Data from IRS Form 990, 2024; updated October 2026.

Financial Overview

From 2024 IRS Form 990 · View filing

Total Assets

$575K

-27.9% YoY

Revenue

$133K

-53.8% YoY

Net Investment Income

$32K

+71.8% YoY

Expenses

$357K

+182.2% YoY

About Shwachman-Diamond Syndrome Alliance Inc

Based on IRS filings

Shwachman-Diamond Syndrome Alliance Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Woburn, MA. IRS filing data is available from 2021 through 2024. As of 2024, the organization holds $575K in total assets. Net investment income was $32K.

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

1state

States

Cities

Camden

Giving Over Time

Total grant dollars and number of grants per year

$0$2K$4K$6K$8K0 grants2021 1 grant2022 Total only2023 0 grants2024

From 2022 to 2023, annual grant giving ranged from $5K (2023) to $8K (2022). In 2023 it reported $5K in grants paid, as a total without an itemized list.

Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.

Grant Insights

How this funder distributes its grants

Grant Size Distribution

1 grant across all recorded years

1<$50K$50–100K$100–250K$250–500K$500K–1M$1–5M$5M+

The most common grant size was under $50K: 1 grant of 1 (100%).

Giving History

Grant recipients and amounts by year

No grants recorded for 2024.

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$200K$400K$600K2021 2022 2023 2024
Metric202420232022
Total Assets$575,441$797,678$635,328
Revenue$133,392$288,814$336,751
Expenses$356,884$126,464$102,768
Net Investment Income$32,179$18,731—

Data update history

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2022 (received by the IRS June 1, 2023)
  2. Updated Form 990 for fiscal year 2023 (received by the IRS September 27, 2024)
  3. IRS filings on file for fiscal years 2021–2024

Leadership & Key People

Officers and directors from IRS filings

Shwachman-Diamond Syndrome Alliance Inc is led by Eszter Hars, CEO since 2024 (on filings since 2021); 1 of 6 officers listed in 2024 is compensated.

Officers on the 2024 filing

  • Eszter Hars

    CEO

    President → CEO, 2024

    On filings since 2021

    35 hrs/week

    $80K (2022) → $170K (2024)

  • Lotien Huang

    President

    Treasurer → Member, 2022

    Member → President, 2024

    On filings since 2021

    1 hr/week

    No compensation reported

  • Dora Erdos

    Member

    Secretary → Member, 2023

    On filings since 2021

    1 hr/week

    No compensation reported

  • Indrani Chatterjee

    Member

    On filings since 2023

    1 hr/week

    No compensation reported

  • Marcelo G DeCastro

    Secretary

    On filings since 2023

    1 hr/week

    No compensation reported

  • William Chen

    Treasurer

    On filings since 2023

    1 hr/week

    No compensation reported

Former officers (3)
  • Former: Anne Duprey (2022) — Secretary
  • Former: Kati Ebrahim (2022) — Treasurer
  • Former: Lisa Superina (2022) — Member

Data from IRS Form 990 filings, 2021–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.

Compensation Overview

From 2024 IRS filing

Eszter Hars — CEO: $170KEszter HarsCEO$170K

The highest reported compensation on the 2024 filing was $170K, to Eszter Hars (CEO).

Frequently asked questions about Shwachman-Diamond Syndrome Alliance Inc

How large is Shwachman-Diamond Syndrome Alliance Inc?

Shwachman-Diamond Syndrome Alliance Inc reported $575K in total assets on its 2024 IRS Form 990. Its revenue that year was $133K.

What is Shwachman-Diamond Syndrome Alliance Inc?

Shwachman-Diamond Syndrome Alliance Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Woburn, MA. It holds $575K in total assets as of 2024.

Where does Shwachman-Diamond Syndrome Alliance Inc operate?

Shwachman-Diamond Syndrome Alliance Inc has awarded grants in New Jersey.

What is Shwachman-Diamond Syndrome Alliance Inc's EIN?

Shwachman-Diamond Syndrome Alliance Inc's EIN (Employer Identification Number) is 84-4654297. IRS Form 990 filing data is available on this page for 2021–2024.

Data last updated October 2026. Sourced from IRS Form 990 filings.

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