Shwachman-Diamond Syndrome Alliance Inc
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.
Shwachman-Diamond Syndrome Alliance Inc at a glance
- Total assets
- $575,441
- -27.9% vs 2023
- Revenue (2024)
- $133,392
- -53.8% vs 2023
- Net investment income (2024)
- $32,179
- +71.8% vs 2023
- Expenses (2024)
- $356,884
- +182.2% vs 2023
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated October 2026.
Who Shwachman-Diamond Syndrome Alliance Inc funds
How this funder distributes its grants
Grant Size Distribution
1 grant across all recorded years
The most common grant size was under $50K: 1 grant of 1 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
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.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Coriell Institute Camden, NJ | Medical Research - Biobank Development | $8,000 |
Ready to take the next step with Shwachman-Diamond Syndrome Alliance Inc?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $575,441 | $133,392 | $356,884 | — | — | $32,179 |
| 2023 | $797,678 | $288,814 | $126,464 | $5,000 | Total only | $18,731 |
| 2022 | $635,328 | $336,751 | $102,768 | $8,000 | 1 | — |
| 2021 | $401,345 | $387,568 | $1,811 | — | — | — |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
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.
Focus Areas
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
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.
Data update history
(3)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2022 (received by the IRS June 1, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS September 27, 2024)
- IRS filings on file for fiscal years 2021–2024
Live grants for the work Shwachman-Diamond Syndrome Alliance Inc funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Shwachman-Diamond Syndrome Alliance Inc's focus areas in our free grants database
Similar Funders
Similar funders in Massachusetts
Boston Foundation Inc
Boston, MA
The Boston Foundation funds nonprofits and community initiatives focused on equity and opportunity, including child well-being, economic opportunity, community wealth, and community leadership, primarily in Greater Boston. Its 2025 grants had a median of $25,000, while specific programs offer amounts such as $50,000; whether it accepts unsolicited requests is not stated.
Assets
$2.1B
Grants
2,375
Total Given
$228.4M
Barr Foundation
Boston, MA
The Barr Foundation funds arts and creativity, climate, education, and New England’s social sector, primarily through long-term support for organizations in New England. Its 2024 grants ranged from $100 to $3.275 million, with a median of $80,000. Its filing says it accepts only requests from preselected organizations and does not accept unsolicited requests, though its website describes program-page inquiries and occasional open calls.
Assets
$1.9B
Grants
903
Total Given
$123.2M
Liberty Mutual Foundation Inc
Boston, MA
Liberty Mutual Foundation funds basic needs such as food and shelter, education and workforce development, and climate and community infrastructure, including homelessness and community preparedness programs. Its 2024 grants had a median of $35,000, and most funding supports organizations or programs serving the Boston area, though it also gives elsewhere. It accepts unsolicited online requests on a rolling basis, with no submission deadlines.
Assets
$46.1M
Grants
706
Total Given
$50.6M
Cummings Foundation Grants Inc (FKA Oneworld Boston Inc)
Woburn, MA
Cummings Foundation Grants Inc. funds nonprofits working in human services, education, healthcare, fairness and justice, and the environment, primarily in greater Boston and eastern Massachusetts. Its 2024 grants ranged from $1,000 to $3.5 million, with a median of $35,000; it accepts letters of inquiry through an online portal during its application cycle, which was not open at the time described.
Assets
$258.2M
Grants
658
Total Given
$38.2M
American Tower Corporation Foundation
Boston, MA
Assets
$15.4M
Grants
632
Total Given
$1.7M
The Stephen Phillips Memorial Scholarship Fund Inc
Boston, MA
The fund awards need- and merit-based scholarships to full-time students pursuing bachelor’s degrees who permanently reside in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, or Vermont; recipients may attend college anywhere in the United States. Awards generally range from $3,000 to $17,000, with typical annual awards of $6,000 to $10,000. It accepts applications through an online student portal; the profile does not describe other unsolicited requests.
Assets
$41.6M
Grants
520
Total Given
$5.1M
More similar funders
More Funders in Massachusetts
The filing figures on this page are open data under CC BY 4.0. About GrantGraph Open
Figures come from Shwachman-Diamond Syndrome Alliance Inc's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
Shwachman-Diamond Syndrome Alliance Inc down — hundreds of funders to go?