Totals
- Total revenue
- $478,581
- Total expenses
- $502,388
- Contributions and grants received
- $478,581
- Grants paid
- $373,457
- Program service revenue
- $0
- Investment income
- $0
- Other revenue
- $0
- Total assets, end of year
- $1,053,675
- Total liabilities, end of year
- $0
- Net assets or fund balances, end of year
- $1,053,675
- Program services expenses (Part IX)
- $396,660
- Management and general expenses
- $105,728
- Fundraising expenses
- $0
- Program service expenses (Part III)
- $396,660
Program services were 79.0% 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
$478,581
-
8c · Net income from fundraising events
total $0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $373,457 · program services $373,457
-
5 · Compensation of officers, directors and key employees
total $60,775 · management and general $60,775
-
7 · Other salaries and wages
total $342 · management and general $342
-
10 · Payroll taxes
total $4,675 · management and general $4,675
-
11b · Fees: legal
total $13,084 · management and general $13,084
-
12 · Advertising and promotion
total $2,949 · management and general $2,949
-
13 · Office expenses
total $1,590 · management and general $1,590
-
14 · Information technology
total $6,950 · management and general $6,950
-
17 · Travel
total $3,347 · program services $3,347
-
19 · Conferences, conventions and meetings
total $5,200 · program services $5,200
-
24a · Other expenses: FEES FOR SERVICE
total $14,656 · program services $14,656
-
24b · Other expenses: BANK CREDIT CHARGES
total $4,744 · management and general $4,744
-
24c · Other expenses: PAYROLL SERVICE FEE
total $440 · management and general $440
-
24e · All other expenses
total $10,179 · management and general $10,179
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,089,878 · end of year $1,053,675
-
27 · Net assets without donor restrictions
beginning of year $989,878 · end of year $853,675
-
28 · Net assets with donor restrictions
beginning of year $100,000 · end of year $200,000
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.
Listed in Part VII
-
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.
Schedule J
Answered yes
None.
Answered no
- 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
-
UT SOUTHWESTERN
$218,556
RESEARCH INTIATIVE
-
WASHINTON UNIVERSITY
$70,000
RESEARCH
-
$34,000
RESEARCH
-
UNRAVEL NEUROMARKETING RESEARCH
$33,250
RESEARCH INITIATIVE
-
$17,651
RESEARCH INITIATIVE
Provenance
- Return type
- form_990
- Tax year
- 2025
- Filed
- 20 January 2026
- IRS schema version
- 2025v4.0
- Source object
- 202620339349300322
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
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