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← TREATMENTS FOR EPILEPSY AND SYMPTOMS OF SLC13A5 FOUNDATION

Form 990 for tax year 2024

Filed by TREATMENTS FOR EPILEPSY AND SYMPTOMS OF SLC13A5 FOUNDATION.

Totals

Total revenue
$541,973
Total expenses
$584,239
Contributions and grants received
$581,056
Grants paid
$174,093
Program service revenue
$0
Investment income
$1,036
Other revenue
-$40,119
Total assets, end of year
$407,310
Total liabilities, end of year
$1,651
Net assets or fund balances, end of year
$405,659
Program services expenses (Part IX)
$515,458
Management and general expenses
$13,473
Fundraising expenses
$55,308
Program service expenses (Part III)
$515,458

Program services were 88.2% 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

    $215,042

  • 1f · All other contributions, gifts and grants

    $366,014

  • 3 · Investment income

    total $1,036 · excluded $1,036

  • 8a · Fundraising events: contributions included on line 1c

    $215,042

  • 8b · Fundraising events: direct expenses

    $40,330

  • 8c · Net income from fundraising events

    total -$40,330 · excluded -$40,330

  • 11a · Other revenue: Other Income

    total $211 · related or exempt $211

  • 11e · Other revenue, total

    $211

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $113,644 · program services $113,644

  • 3 · Grants to foreign organizations and individuals

    total $60,449 · program services $60,449

  • 5 · Compensation of officers, directors and key employees

    total $67,838 · program services $55,189 · fundraising $12,649

  • 7 · Other salaries and wages

    total $175,688 · program services $142,929 · fundraising $32,759

  • 8 · Pension plan contributions

    total $6,031 · program services $6,031

  • 9 · Other employee benefits

    total $877 · management and general $877

  • 10 · Payroll taxes

    total $17,247 · program services $13,675 · fundraising $3,572

  • 11c · Fees: accounting

    total $5,701 · management and general $5,701

  • 11f · Fees: investment management

    total $150 · management and general $150

  • 11g · Fees: other

    total $14,003 · program services $9,652 · management and general $1,425 · fundraising $2,926

  • 12 · Advertising and promotion

    total $3,243 · program services $3,243

  • 13 · Office expenses

    total $4,593 · program services $2,294 · management and general $2,299

  • 14 · Information technology

    total $9,277 · program services $7,379 · management and general $1,898

  • 17 · Travel

    total $14,804 · program services $14,804

  • 19 · Conferences, conventions and meetings

    total $86,169 · program services $86,169

  • 24a · Other expenses: Bank Fees

    total $1,123 · management and general $1,123

  • 24b · Other expenses: Miscellaneous

    total $3,402 · fundraising $3,402

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $390,098 · end of year $369,420

  • 3 · Pledges and grants receivable

    beginning of year $67,815 · end of year $36,027

  • 15 · Other assets

    beginning of year $1,863 · end of year $1,863

  • 17 · Accounts payable and accrued expenses

    beginning of year $11,812 · end of year $1,651

  • 27 · Net assets without donor restrictions

    beginning of year $447,964 · end of year $405,659

Mission and programs · 2024

Mission

Tess Research Foundations goal is to find better treatment options for SLC13A5 deficiency, (Continued on Sch O)

  • Funding Scientific Research - We continued our in-person, digital and remote natural history studies for SLC13A5 with Brown University, UT Southwestern, and Stanford University. These studies are key for our clinical trial readiness. We also funded basic and translational research.

    Expenses $281,706

  • Education, Family Support and Awareness - We are the only organization dedicated to supporting families with SLC13A5 Epilepsy and raising awareness about the disease. Our ongoing program includes sharing updates about the latest research findings and connecting and empowering families so they can share their experiences and support one another. We have an annual awareness day (May 13), host monthly virtual support calls, maintain a website, and send a monthly electronic newsletter.

    Expenses $132,924

  • Conference - We continue to create a patient-centered network of doctors, researchers, clinicians, and families. TESS hosted the largest-ever SLC13A5 family and professional conference in Providence, Rhode Island. We attend neurology, epilepsy, and drug development conferences.

    Expenses $100,828

As filed on the 2024 return.

Listed in Part VII

  • Amber Black

    Secretary

    Total calculated
    $67,838
    From this org
    $67,838
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Paula Gani

    Director

    Total calculated
    $0
    Hours/week
    3

  • Courtney Alberti

    Director

    Total calculated
    $0
    Hours/week
    2

  • Adam Alberti

    Director

    Total calculated
    $0
    Hours/week
    2

  • Lee Scheuer

    Director

    Total calculated
    $0
    Hours/week
    3

  • Robert Wassman

    Director

    Total calculated
    $0
    Hours/week
    3

  • Don Neault

    Director

    Total calculated
    $0
    Hours/week
    3

  • Janet Wojcicki

    Director

    Total calculated
    $0
    Hours/week
    3

  • Megan Gilbert

    Director

    Total calculated
    $0
    Hours/week
    3

  • Rich Windisch

    Director

    Total calculated
    $0
    Hours/week
    3

  • Kimberly Nye

    Chair & Executive Director

    Total calculated
    $0
    Hours/week
    40

  • Kevin McDonnell

    Treasurer

    Total calculated
    $0
    Hours/week
    3

  • Michael Black

    Vice Chair

    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.

Grants on this return

Provenance

Return type
form_990
Tax year
2024
Filed
11 November 2025
IRS schema version
2024v5.2
Source object
202533169349301238

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