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Nonprofiteer
← TATTON BROWN RAHMAN SYNDROME COMMUNITY INC

Form 990 for tax year 2024

Filed by TATTON BROWN RAHMAN SYNDROME COMMUNITY INC.

Totals

Total revenue
$270,669
Total expenses
$399,562
Contributions and grants received
$181,535
Grants paid
$110,000
Program service revenue
$61,008
Investment income
$28,126
Other revenue
$0
Total assets, end of year
$691,528
Total liabilities, end of year
$20,956
Net assets or fund balances, end of year
$670,572
Program services expenses (Part IX)
$312,490
Management and general expenses
$27,590
Fundraising expenses
$59,482
Program service expenses (Part III)
$312,490

Program services were 78.2% 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.

  • 1f · All other contributions, gifts and grants

    $181,535

  • 2a · Program service revenue: Conference

    total $61,008 · related or exempt $61,008

  • 3 · Investment income

    total $28,126 · excluded $28,126

  • 8c · Net income from fundraising events

    total $0

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $10,000 · program services $10,000

  • 3 · Grants to foreign organizations and individuals

    total $100,000 · program services $100,000

  • 5 · Compensation of officers, directors and key employees

    total $76,650 · program services $67,819 · management and general $4,571 · fundraising $4,260

  • 7 · Other salaries and wages

    total $57,332 · program services $50,726 · management and general $3,419 · fundraising $3,187

  • 8 · Pension plan contributions

    total $2,280 · program services $2,017 · management and general $136 · fundraising $127

  • 9 · Other employee benefits

    total $5,925 · program services $5,243 · management and general $353 · fundraising $329

  • 10 · Payroll taxes

    total $10,852 · program services $9,602 · management and general $647 · fundraising $603

  • 11c · Fees: accounting

    total $9,600 · management and general $9,600

  • 11g · Fees: other

    total $69,874 · program services $34,914 · fundraising $34,960

  • 12 · Advertising and promotion

    total $6,536 · program services $4,929 · management and general $200 · fundraising $1,407

  • 13 · Office expenses

    total $9,159 · program services $1,300 · management and general $5,315 · fundraising $2,544

  • 14 · Information technology

    total $8,254 · program services $7,941 · management and general $216 · fundraising $97

  • 17 · Travel

    total $9,481 · program services $9,143 · fundraising $338

  • 19 · Conferences, conventions and meetings

    total $12,345 · program services $715 · fundraising $11,630

  • 23 · Insurance

    total $3,133 · management and general $3,133

  • 24a · Other expenses: Bio Repository

    total $8,141 · program services $8,141

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $844,432 · end of year $688,150

  • 3 · Pledges and grants receivable

    beginning of year $24,012 · end of year $3,378

  • 17 · Accounts payable and accrued expenses

    beginning of year $68,979 · end of year $20,956

  • 27 · Net assets without donor restrictions

    beginning of year $645,133 · end of year $667,194

  • 28 · Net assets with donor restrictions

    beginning of year $154,332 · end of year $3,378

Mission and programs · 2024

Mission

TBRS Community aims to support all families affected by TBRS and advance research toward interventions.

  • 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 $149,692 · Grants $110,000

  • 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 $116,651

  • 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 $46,147 · Revenue $61,008

As filed on the 2024 return.

Listed in Part VII

  • Jill Kiernan

    Executive Director

    Total calculated
    $78,930
    From this org
    $76,650
    From related orgs
    $0
    Other
    $2,280
    Hours/week
    40

  • Robert Thibodeau

    Director

    Total calculated
    $0
    Hours/week
    1

  • Zoe Wisnoski

    Director

    Total calculated
    $0
    Hours/week
    1

  • Monic Bejano

    Director

    Total calculated
    $0
    Hours/week
    1

  • Kacee Richter

    President

    Total calculated
    $0
    Hours/week
    10

  • Kerry Grens

    Vice President

    Total calculated
    $0
    Hours/week
    5

  • Erin Rooker

    Marketing Manager

    Total calculated
    $0
    Hours/week
    5

  • Thomas Watson

    Treasurer

    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
22 July 2025
IRS schema version
2024v5.2
Source object
202542039349300214

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