Totals
- Total revenue
- $745,674
- Total expenses
- $1,099,089
- Contributions and grants received
- $740,506
- Grants paid
- $991,831
- Program service revenue
- $0
- Investment income
- $23,556
- Other revenue
- -$18,388
- Total assets, end of year
- $532,282
- Total liabilities, end of year
- $335,569
- Net assets or fund balances, end of year
- $196,713
- Program services expenses (Part IX)
- $1,003,105
- Management and general expenses
- $24,238
- Fundraising expenses
- $71,746
- Program service expenses (Part III)
- $1,003,105
Program services were 91.3% 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.
-
1c · Fundraising events
$261,892
-
1f · All other contributions, gifts and grants
$478,614
-
3 · Investment income
total $23,556 · excluded $23,556
-
8a · Fundraising events: contributions included on line 1c
$261,892
-
8b · Fundraising events: direct expenses
$18,388
-
8c · Net income from fundraising events
total -$18,388
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $731,981 · program services $731,981
-
2 · Grants to domestic individuals
total $7,500 · program services $7,500
-
3 · Grants to foreign organizations and individuals
total $252,350 · program services $252,350
-
11c · Fees: accounting
total $14,680 · management and general $14,680
-
11e · Fees: professional fundraising services
total $57,871 · fundraising $57,871
-
11f · Fees: investment management
total $245 · management and general $245
-
11g · Fees: other
total $488 · program services $488
-
13 · Office expenses
total $3,616 · management and general $3,616
-
14 · Information technology
total $12,630 · program services $5,952 · fundraising $6,678
-
17 · Travel
total $867 · management and general $867
-
23 · Insurance
total $1,562 · management and general $1,562
-
24a · Other expenses: BANK CHARGES
total $7,329 · management and general $132 · fundraising $7,197
-
24b · Other expenses: CENTERS FOR EXCELLENCE
total $3,065 · program services $3,065
-
24c · Other expenses: LICENSE & FEES
total $2,736 · management and general $2,736
-
24d · Other expenses: PROGRAM EVENT EXPENSES
total $1,769 · program services $1,769
-
24e · All other expenses
total $400 · management and general $400
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $354,435 · end of year $128,615
-
3 · Pledges and grants receivable
end of year $8,660
-
9 · Prepaid expenses and deferred charges
end of year $42,840
-
10a · Land, buildings and equipment: cost or other basis
$3,295
-
10b · Land, buildings and equipment: accumulated depreciation
$3,295
-
11 · Investments: publicly traded securities
beginning of year $524,645 · end of year $352,167
-
17 · Accounts payable and accrued expenses
beginning of year $1,065 · end of year $6,269
-
18 · Grants payable
beginning of year $327,887 · end of year $300,000
-
19 · Deferred revenue
end of year $29,300
-
27 · Net assets without donor restrictions
beginning of year $527,128 · end of year $160,553
-
28 · Net assets with donor restrictions
beginning of year $23,000 · end of year $36,160
Mission and programs · 2025
Mission
TO EDUCATE, INFORM, AND PROVIDE SUPPORT SERVICES REGARDING KENNEDY'S DISEASE (SPINAL AND BULBAR MUSCULAR ATROPHY).
-
TO FURTHER RESEARCH TO FIND A CURE AND/OR TREATMENT FOR KENNEDY'S DISEASE (SPINAL AND BULBAR MUSCULAR ATROPHY).
Expenses $931,000 · Grants $931,000
-
TO PROVIDE SUPPORT FOR THOSE WHO HAVE, OR ARE A CARRIER OF, KENNEDY'S DISEASE (SPINAL AND BULBAR MUSCULAR ATROPHY) AND THEIR FAMILY MEMBERS AND CAREGIVERS.
Expenses $8,209
-
TO PROVIDE EDUCATION AND INFORMATION REGARDING KENNEDY'S DISEASE (SPINAL AND BULBAR MUSCULAR ATROPHY).
Expenses $63,896 · Grants $60,831
As filed on the 2025 return.
Listed in Part VII
-
TERRY THOMPSON
PRESIDENT
- Total calculated
- $0
- Hours/week
- 20
-
JAMESON PARKER
VICE PRESIDE
- Total calculated
- $0
- Hours/week
- 5
-
JOHN LAUBER
TREASURER
- Total calculated
- $0
- Hours/week
- 20
-
KATHY THOMPSON
SECRETARY
- Total calculated
- $0
- Hours/week
- 15
-
NICK HOLDGATE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 3
-
RON MOFFETT
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 8
-
LEW MYERS
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 12
-
STEVEN RITTMASTER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
PETE SARIANO
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 3
-
JOAN SORENSEN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 4
-
DALE TRAXLER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
RANDY SOO HOO
FORMER BOARD
- Total calculated
- $0
- Hours/week
- 6
-
SIMON HILL
FORMER BOARD
- Total calculated
- $0
- Hours/week
- 6
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.
Grants on this return
-
$177,000
RESEARCH
-
$100,000
RESEARCH
-
$100,000
RESEARCH
-
$100,000
RESEARCH
-
CASE WESTERN RESERVE UNIVERSITY
$77,000
RESEARCH
-
RESEARCH
-
$40,331
EDUCATION
-
$37,561
RESEARCH
-
$18,089
RESEARCH
Provenance
- Return type
- form_990
- Tax year
- 2025
- Filed
- 19 March 2026
- IRS schema version
- 2025v4.0
- Source object
- 202640789349300744
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
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