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← BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION

Form 990 for tax year 2024

Filed by BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION.

Totals

Total revenue
$601,964
Total expenses
$967,326
Contributions and grants received
$566,255
Grants paid
$135,863
Program service revenue
$0
Investment income
$35,709
Other revenue
$0
Total assets, end of year
$965,863
Total liabilities, end of year
$197,874
Net assets or fund balances, end of year
$767,989
Program services expenses (Part IX)
$685,086
Management and general expenses
$202,640
Fundraising expenses
$79,600
Program service expenses (Part III)
$685,086

Program services were 70.8% 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

    $566,255

  • 3 · Investment income

    total $35,709 · related or exempt $35,709

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $135,863 · program services $135,863

  • 5 · Compensation of officers, directors and key employees

    total $100,000 · program services $63,500 · management and general $24,500 · fundraising $12,000

  • 7 · Other salaries and wages

    total $230,829 · program services $143,789 · management and general $62,504 · fundraising $24,536

  • 9 · Other employee benefits

    total $17,633 · program services $9,652 · management and general $5,595 · fundraising $2,386

  • 10 · Payroll taxes

    total $21,150 · program services $11,498 · management and general $6,722 · fundraising $2,930

  • 11c · Fees: accounting

    total $36,590 · program services $1,422 · management and general $31,804 · fundraising $3,364

  • 11f · Fees: investment management

    total $1,924 · management and general $1,924

  • 11g · Fees: other

    total $91,495 · program services $81,518 · management and general $1,775 · fundraising $8,202

  • 13 · Office expenses

    total $48,431 · program services $25,040 · management and general $10,608 · fundraising $12,783

  • 14 · Information technology

    total $65,700 · program services $46,359 · management and general $15,475 · fundraising $3,866

  • 16 · Occupancy

    total $22,476 · program services $6,903 · management and general $11,635 · fundraising $3,938

  • 17 · Travel

    total $37,925 · program services $35,235 · management and general $1,784 · fundraising $906

  • 19 · Conferences, conventions and meetings

    total $2,255 · program services $2,255

  • 22 · Depreciation, depletion and amortization

    total $11,623 · management and general $11,623

  • 23 · Insurance

    total $12,543 · program services $3,512 · management and general $4,482 · fundraising $4,549

  • 24a · Other expenses: MEALS

    total $78,652 · program services $77,798 · management and general $740 · fundraising $114

  • 24b · Other expenses: PROGRAM EXPENSES

    total $37,697 · program services $37,697

  • 24c · Other expenses: BANK FEES

    total $11,548 · program services $289 · management and general $11,259

  • 24d · Other expenses: MISCELLANEOUS

    total $2,661 · program services $2,535 · management and general $100 · fundraising $26

  • 24e · All other expenses

    total $331 · program services $221 · management and general $110

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $445,787 · end of year $366,862

  • 4 · Accounts receivable

    beginning of year $43,630

  • 9 · Prepaid expenses and deferred charges

    beginning of year $4,282 · end of year $4,282

  • 10a · Land, buildings and equipment: cost or other basis

    $100,514

  • 10b · Land, buildings and equipment: accumulated depreciation

    $77,775

  • 10c · Land, buildings and equipment, net

    beginning of year $34,362 · end of year $22,739

  • 11 · Investments: publicly traded securities

    beginning of year $668,380 · end of year $570,630

  • 15 · Other assets

    beginning of year $6,810 · end of year $1,350

  • 17 · Accounts payable and accrued expenses

    beginning of year $26,983 · end of year $167,874

  • 18 · Grants payable

    beginning of year $56,000 · end of year $30,000

  • 27 · Net assets without donor restrictions

    beginning of year $997,221 · end of year $91,405

  • 28 · Net assets with donor restrictions

    beginning of year $123,047 · end of year $676,584

Mission and programs · 2024

Mission

OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE.

  • PROGRAMS SUCH AS THE SIBLING PROGRAM, FAMILY HELP FUND, PARENT/MENTORS AND THE GENERAL BEREAVEMENT PROGRAM ALL WILL HELP TO ALLEVIATE STRESS AND HARDSHIP ON FAMILIES WHOSE LOVED ONES ARE VICTIMS OF BATTEN DISEASE.

    Expenses $239,406

  • GRANTS WERE GIVEN FOR RESEARCH FOR A CURE FOR BATTEN DISEASE.

    Expenses $201,481 · Grants $135,863

  • CONFERENCES AND CONVENTIONS HELD FOR RESEARCH, DISCUSSIONS AND SUPPORT FOR A CURE FOR BATTEN DISEASE.

    Expenses $244,199

As filed on the 2024 return.

Listed in Part VII

  • AMY FENTON PARKER

    PRESIDENT &

    Total calculated
    $100,000
    From this org
    $100,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • DARLENE ROYALTY

    BOARD CHAIR

    Total calculated
    $0
    Hours/week
    1

  • BARBARA WUEBBELS

    BOARD VICE C

    Total calculated
    $0
    Hours/week
    1

  • BARBARA MCDONOUGH

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • FRED SURREY

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • JOHN IRELAND

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • WAYNE KIEFER

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • KATE HALLER

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DAVE PEARCE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • SUZETTE JAMES

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • FERNANDA LEAL-PARDINAS

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • ANTHONY FERRANDINO

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DONNA FOGEL

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JOHN PATTERSON

    DIRECTOR

    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.

Grants on this return

Provenance

Return type
form_990
Tax year
2024
Filed
11 September 2025
IRS schema version
2024v5.0
Source object
202512959349301226

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