- Revenue 2023
- $7,430,625
- Expenses 2023
- $7,652,304
Program services were 77.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- G80
- Classification
- 1000
- Street
- 244 MADISON AVENUE 104
These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).
Officers and directors · 2023
As listed in Part VII of the 2023 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
JILL VEDDER
CHAIRWOMEN
- Total calculated
- $0
- Hours/week
- 5
-
ALEXANDER LEMOS
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
ARI DESHE
VICE CHAIRMAN
- Total calculated
- $0
- Hours/week
- 1
-
CHAD CERETTO
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
DANIEL DESHE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
RIC FIRTH
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
COREY GRAY
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
JENNIFER KAUF
SECRETARY
- Total calculated
- $0
- Hours/week
- 1
-
EMILY KUBIK
TREASURER
- Total calculated
- $0
- Hours/week
- 1
-
FAYE DILGEN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
GREG LICHOLAI
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
ED VEDDER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
TRACY BALDWIN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
MICHAEL PATRICK HUND
CEO
- Total calculated
- $427,298
- From this org
- $427,298
- From related orgs
- $0
- Other
- $0
- Hours/week
- 60
Schedule J breakdown matched by us
- Base
- $291,346
- Bonus
- $135,352
- Other
- $600
- Deferred
- $0
- Nontaxable benefits
- $0
- Filer's total
- $427,298
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 — 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. Earlier years are each on their own filing page.
Filings
-
2023
- Revenue
- $7,430,625
- Expenses
- $7,652,304
- Contributions
- $7,112,051
- Grants paid
- $5,456,354
-
2022
- Revenue
- $6,450,445
- Expenses
- $7,021,827
- Contributions
- $6,106,138
- Grants paid
- $5,371,260
The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.
Grants made
-
$1,937,685
2023 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$1,680,779
2022 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$1,044,842
2022 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$500,000
2023 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$487,935
2022 TO FUND RESEARCH TO FIND A CURE FOR EB
-
2022 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$415,892
2022 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$335,144
2023 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$327,837
2022 TO FUND RESEARCH TO FIND A CURE FOR EB
-
$244,800
2023 TO FUND RESEARCH TO FIND A CURE FOR EB
The 10 largest by cash amount. The API serves every itemized grant.
Grants received
-
FIDELITY INVESTMENTS CHARITABLE GIFT FUND
$1,356,030
2024 For grant recipient's exempt purposes
-
$470,553
2024 GENERAL SUPPORT
-
2023 For grant recipient's exempt purposes
-
2022 Grant
-
$125,000
2022 GENERAL SUPPORT
-
$123,000
2024 CULTURE & ARTS
-
$100,000
2024 GENERAL SUPPORT
-
$100,000
2023 GENERAL SUPPORT
-
2022 For grant recipient's exempt purposes
-
DONOR ADVISED CHARITABLE GIVING
$73,400
2024 HEALTH
The 10 largest by cash amount. The API serves every itemized grant.
Related organizations
From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.
Declared on its 2023 return
-
EB RESEARCH PARTNERSHIP (AUSTRALIA) LIMITED
FUNDING RESEARCH TO DISCOVER TREATMENTS & CURES FOR EB · AS
Other IRS files
Auto-Revocation List
Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.
Publication 78
Listed as of 10 September 2026, under deductibility PC.
These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.