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← TREATMENTS FOR EPILEPSY AND SYMPTOMS OF SLC13A5 FOUNDATION

Form 990 for tax year 2022

Filed by TREATMENTS FOR EPILEPSY AND SYMPTOMS OF SLC13A5 FOUNDATION.

Totals

Total revenue
$610,734
Total expenses
$868,351
Contributions and grants received
$610,734
Grants paid
$527,168
Program service revenue
$0
Investment income
$0
Other revenue
$0
Total assets, end of year
$447,207
Total liabilities, end of year
$5,203
Net assets or fund balances, end of year
$442,004
Program services expenses (Part IX)
$765,079
Management and general expenses
$40,554
Fundraising expenses
$62,718
Program service expenses (Part III)
$765,079

Program services were 88.1% 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.

  • 1e · Government grants (contributions)

    $15,000

  • 1f · All other contributions, gifts and grants

    $595,734

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $336,274 · program services $336,274

  • 3 · Grants to foreign organizations and individuals

    total $190,894 · program services $190,894

  • 7 · Other salaries and wages

    total $202,645 · program services $152,361 · management and general $14,034 · fundraising $36,250

  • 10 · Payroll taxes

    total $17,234 · program services $13,041 · management and general $1,286 · fundraising $2,907

  • 11c · Fees: accounting

    total $4,242 · management and general $4,242

  • 11g · Fees: other

    total $14,852 · program services $10,156 · management and general $3,096 · fundraising $1,600

  • 12 · Advertising and promotion

    total $1,141 · program services $826 · management and general $48 · fundraising $267

  • 13 · Office expenses

    total $5,822 · program services $3,091 · management and general $1,632 · fundraising $1,099

  • 14 · Information technology

    total $12,711 · program services $10,019 · management and general $2,182 · fundraising $510

  • 16 · Occupancy

    total $13,027 · program services $800 · management and general $12,227

  • 17 · Travel

    total $5,880 · program services $5,036 · fundraising $844

  • 19 · Conferences, conventions and meetings

    total $42,188 · program services $42,188

  • 23 · Insurance

    total $1,537 · management and general $1,537

  • 24a · Other expenses: Other

    total $19,904 · program services $393 · management and general $270 · fundraising $19,241

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $691,851 · end of year $424,997

  • 4 · Accounts receivable

    beginning of year $24,180 · end of year $20,347

  • 15 · Other assets

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

  • 17 · Accounts payable and accrued expenses

    beginning of year $18,273 · end of year $5,203

  • 27 · Net assets without donor restrictions

    beginning of year $699,621 · end of year $442,004

Mission and programs · 2022

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 SLC13A5with Citizen Corporation, Brown University, UT Southwestern, and Stanford University. These studies are key for our clinical trial readiness. We also funded basic and translational research in the US and Europe.

    Expenses $633,004 · Grants $521,118

  • Education, Family Support and Awareness - We helped more families find an early and accurate diagnosis. Wepublished in peer reviewed journals, held monthly family support groups, and funded key research to better understand the disease, and we have our first gene therapy drug in development.

    Expenses $83,910 · Grants $1,050

  • Conference - We continue to create a patient-centered network of doctors, researchers, clinicians and families. We hosted an International Research Roundtable and a Clinical Research Conference. We attended professionalconferences in the epilepsy and rare disease space. We remain the only organization in the world solely dedicated to this disorder.

    Expenses $48,165 · Grants $5,000

As filed on the 2022 return.

Listed in Part VII

  • 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

  • Courtney Alberti

    Director

    Total calculated
    $0
    Hours/week
    2

  • Paula Gani

    Secretary

    Total calculated
    $0
    Hours/week
    5

  • Kimberly Nye

    President

    Total calculated
    $0
    Hours/week
    40

  • Kevin McDonnell

    Treasurer

    Total calculated
    $0
    Hours/week
    3

  • Amber 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
2022
Filed
27 September 2023
IRS schema version
2022v5.0
Source object
202332709349300128

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