Form 990 for tax year 2025

Totals

Total revenue

$349,738

Total expenses

$329,642

Contributions and grants received

$314,482

Grants paid

$84,000

Program service revenue

$12,870

Investment income

$22,386

Other revenue

$0

Total assets, end of year

$781,995

Total liabilities, end of year

$91,327

Net assets or fund balances, end of year

$690,668

Program services expenses (Part IX)

$267,977

Management and general expenses

$34,502

Fundraising expenses

$27,163

Program service expenses (Part III)

$267,977

Program services were 81.3% 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.

Mission and programs · 2025

• Research: TBRS-funded research led to potentially lifesaving clinical discoveries, improving monitoring for key health risks. Through our biorepository (45 patient samples) and funded TBRS models, we removed barriers for scientists by providing essential tools for biomarker discovery and treatment development. These efforts have made it easier and faster for researchers to step into TBRS studies, expanding research participation and increasing treatment development potential.

  Expenses $115,642 · Grants $84,000

• Collaborative Research Network: Over the past year, the TBRS Community expanded its Collaborative Research Network (CRN) by fostering cross-disciplinary partnerships, centralizing data, and prioritizing patient-driven research goals. We increased the TBRS Patient Registry to over 200 participants, making it a vital resource for scientific discovery. Additionally, we developed a strategic research roadmap to guide efforts toward clinical outcomes and ensure open access to data, accelerating the path toward effective treatments.

  Expenses $95,845

• Education: In the past year, the TBRS Community delivered critical education and advocacy programs, including: Raising awareness of seizures, cardiac concerns, and cancer risks through scientific publications and advocacy efforts. Launching a Future Planning Series with expert-led sessions on long-term care, financial planning, and adult services, supporting families in making informed decisions. Hosting family education webinars, social groups, and parent support networks, strengthening community connections and equipping families with research and clinical insights.

  Expenses $56,490 · Revenue $12,870

As filed on the 2025 return.

Listed in Part VII

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

• Washington University

  $75,000

  Research

• Unravel Bioscience

  $7,000

  Research

Provenance

Return type

form_990

Tax year

2025

Filed

27 August 2026

IRS schema version

2025v4.2

Source object

202622399349301127

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