- Revenue 2025
- $478,581
- Expenses 2025
- $502,388
Program services were 79.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- T22
- Classification
- 1000
- Street
- 6808 OLD GLORY CT
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).
Other organizations at this address
1 other organization in the IRS Business Master File lists the same street address. matched by us
We match the street line and ZIP code as the IRS gives them, ignoring case and outer spaces and nothing else, so "AVE" and "AVENUE" count as different streets and this list can miss some. A shared address can mean related organizations or a shared office, but it can also be a registered agent, a mail drop or a service provider holding mail for unrelated clients. It is not, by itself, evidence that two organizations are connected.
-
RARE VILLAGE FOUNDATION
EIN 83-4699994
Mission and programs · 2025
Mission
OUR MISSION IS TO UNITE THE GLOBAL LEIGH SYNDROME COMMUNITY TO ACCELERATE PATIENT-CENTERED RESEARCH, TREATMENTS, AND CURES BY FUNDING RESEARCH AND SUPPORTING COLLABORATION IN LEIGH SYNDROME AND MITOCHONDRIAL DISEASE.
-
RESEARCH FUNDING TO ADVANCE TREATMENTS FOR LEIGH SYNDROME AND MITOCHONDRIAL DISEASE
Expenses $373,457 · Grants $373,457
-
EDUCATION, OUTREACH, AND ENGAGEMENT ACTIVITIES DESIGNED TO SUPPORT INDIVIDUALS AND FAMILIES AFFECTED BY LEIGH SYNDROME AND TO ELEVATE PATIENT AND CAREGIVER PERSPECTIVES IN RESEARCH AND CARE
Expenses $23,203
As filed on the 2025 return.
Officers and directors · 2025
As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
Kasey WolebenKASEY WOLEBEN
EXECUTIVE DIRECTOR
- Total calculated
- $60,775
- From this org
- $60,775
- From related orgs
- $0
- Other
- $0
- Hours/week
- 20
-
Bill SuzorBILL SUZOR
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Doug WolebenDOUG WOLEBEN
TREASURER
- Total calculated
- $0
- Hours/week
- 1
-
Jacob BoggsJACOB BOGGS
BOARD MEMBER EMERITUS
- Total calculated
- $0
- Hours/week
- 1
Schedule J breakdown matched by us
- Base
- not reported
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- not reported
-
Courtney BoggsCOURTNEY BOGGS
SECRETARY
- Total calculated
- $0
- Hours/week
- 1
-
Sophia ZilberSOPHIA ZILBER
VICE PRESIDENT
- Total calculated
- $0
- Hours/week
- 5
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. Earlier years are each on their own filing page.
Filings
-
2025
- Revenue
- $478,581
- Expenses
- $502,388
- Contributions
- $478,581
- Grants paid
- $373,457
-
2023
- Revenue
- $560,179
- Expenses
- $201,463
- Contributions
- $560,179
- Grants paid
- $146,764
-
2022
- Revenue
- $480,537
- Expenses
- $215,537
- Contributions
- $480,537
- Grants paid
- $156,918
-
2022
- Revenue
- $480,537
- Expenses
- $215,537
- Contributions
- $480,537
- Grants paid
- $156,918
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.
Other returns filed
-
2021 · 990-EZ
- Revenue
- $49,276
- Expenses
- $51,969
- Assets (EOY)
- $126,765
-
2020 · 990-EZ
- Revenue
- $30,835
- Expenses
- $7,966
- Assets (EOY)
- $129,458
-
2019 · 990-EZ
- Revenue
- $172,395
- Expenses
- $130,830
- Assets (EOY)
- $106,589
-
2018 · 990-PF
- Revenue
- $136,714
- Expenses
- $98,359
- Assets (EOY)
- $0
-
2018 · 990-PF
- Revenue
- $136,714
- Expenses
- $98,359
- Assets (EOY)
- $0
Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.
Grants made
-
UT SOUTHWESTERN
$218,556
2025 RESEARCH INTIATIVE
-
WASHINTON UNIVERSITY
$70,000
2025 RESEARCH
-
$34,000
2025 RESEARCH
-
UNRAVEL NEUROMARKETING RESEARCH
$33,250
2025 RESEARCH INITIATIVE
-
$17,651
2025 RESEARCH INITIATIVE
Grants received
-
SILICON VALLEY COMMUNITY FOUNDATION
$800,000
2024 Sciences
-
COMMUNITIES FOUNDATION OF TEXAS
$100,000
2023 THIS GRANT IS DESIGNATED FOR GENERAL SUPPORT.
-
2023 For grant recipient's exempt purposes
-
$18,222
2024 GENERAL SUPPORT
-
$16,479
2023
-
2025 GENERAL SUPPORT
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 11 November 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.
What this page reflects
The registration facts above come from the IRS Business Master File published 9 November 2026 and read 9 November 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.