Form 990 for tax year 2024
Filed by SHWACHMAN-DIAMOND SYNDROME ALLIANCE INC.
Totals
- Total revenue
- $133,392
- Total expenses
- $356,884
- Contributions and grants received
- $101,213
- Grants paid
- $1,196
- Program service revenue
- $0
- Investment income
- $32,179
- Other revenue
- $0
- Total assets, end of year
- $575,441
- Total liabilities, end of year
- $1,255
- Net assets or fund balances, end of year
- $574,186
- Program services expenses (Part IX)
- $295,677
- Management and general expenses
- $33,711
- Fundraising expenses
- $27,496
- Program service expenses (Part III)
- $295,677
Program services were 82.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1f · All other contributions, gifts and grants
$101,213
-
3 · Investment income
total $32,179 · excluded $32,179
-
8c · Net income from fundraising events
total $0
Functional expenses
Part IX, the statement of functional expenses.
-
2 · Grants to domestic individuals
total $1,196 · program services $1,196
-
5 · Compensation of officers, directors and key employees
total $170,000 · program services $136,000 · management and general $17,000 · fundraising $17,000
-
8 · Pension plan contributions
total $42,500 · program services $34,000 · management and general $4,250 · fundraising $4,250
-
10 · Payroll taxes
total $12,960 · program services $10,599 · management and general $1,036 · fundraising $1,325
-
11b · Fees: legal
total $5,621 · program services $5,621
-
11c · Fees: accounting
total $3,050 · management and general $3,050
-
11g · Fees: other
total $67,876 · program services $64,459 · management and general $540 · fundraising $2,877
-
12 · Advertising and promotion
total $4,977 · program services $4,493 · fundraising $484
-
13 · Office expenses
total $2,873 · program services $612 · management and general $2,212 · fundraising $49
-
14 · Information technology
total $36,470 · program services $33,537 · management and general $1,422 · fundraising $1,511
-
16 · Occupancy
total $3,381 · management and general $3,381
-
17 · Travel
total $57 · management and general $57
-
19 · Conferences, conventions and meetings
total $5,160 · program services $5,160
-
23 · Insurance
total $763 · management and general $763
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $797,414 · end of year $575,441
-
4 · Accounts receivable
beginning of year $264
-
17 · Accounts payable and accrued expenses
end of year $1,255
-
27 · Net assets without donor restrictions
beginning of year $797,678 · end of year $574,186
Mission and programs · 2024
Mission
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.
-
The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. Programs include overlapping efforts in Research & Development (currently focused on research tools, infrastructure, and translation) and Patient Voice (including the collection and communication of patient experiences, unmet needs, and priorities) to support research.
Expenses $295,677 · Grants $1,196
As filed on the 2024 return.
Listed in Part VII
-
Eszter Hars
CEO
- Total calculated
- $212,500
- From this org
- $170,000
- From related orgs
- $0
- Other
- $42,500
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $170,000
- Bonus
- not reported
- Other
- not reported
- Deferred
- $42,500
- Nontaxable benefits
- not reported
- Filer's total
- $212,500
-
Indrani Chatterjee
Member
- Total calculated
- $0
- Hours/week
- 1
-
Dora Erdos
Member
- Total calculated
- $0
- Hours/week
- 1
-
Marcelo G DeCastro
Secretary
- Total calculated
- $0
- Hours/week
- 1
-
William Chen
Treasurer
- Total calculated
- $0
- Hours/week
- 1
-
Lotien Huang
President
- Total calculated
- $0
- Hours/week
- 1
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
None.
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
No itemized grants to organizations on this return.
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 10 November 2025
- IRS schema version
- 2024v5.2
- Source object
- 202543149349304859
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