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Nonprofiteer
← FTD DISORDERS REGISTRY LLC

Form 990 for tax year 2024

Filed by FTD DISORDERS REGISTRY LLC.

Totals

Total revenue
$871,164
Total expenses
$892,503
Contributions and grants received
$800,479
Grants paid
$0
Program service revenue
$0
Investment income
$70,685
Other revenue
$0
Total assets, end of year
$2,218,789
Total liabilities, end of year
$236,444
Net assets or fund balances, end of year
$1,982,345
Program services expenses (Part IX)
$633,262
Management and general expenses
$259,241
Fundraising expenses
$0
Program service expenses (Part III)
$633,262

Program services were 71.0% 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.

  • 1d · Related organizations

    $574,748

  • 1e · Government grants (contributions)

    $223,331

  • 1f · All other contributions, gifts and grants

    $2,400

  • 3 · Investment income

    total $70,685 · excluded $70,685

Functional expenses

Part IX, the statement of functional expenses.

  • 7 · Other salaries and wages

    total $461,511 · program services $449,511 · management and general $12,000

  • 8 · Pension plan contributions

    total $10,918 · program services $9,716 · management and general $1,202

  • 9 · Other employee benefits

    total $53,125 · program services $47,108 · management and general $6,017

  • 10 · Payroll taxes

    total $35,856 · program services $32,614 · management and general $3,242

  • 11c · Fees: accounting

    total $28,218 · management and general $28,218

  • 11g · Fees: other

    total $175,786 · program services $10,000 · management and general $165,786

  • 12 · Advertising and promotion

    total $4,365 · program services $342 · management and general $4,023

  • 13 · Office expenses

    total $1,140 · management and general $1,140

  • 14 · Information technology

    total $20,004 · program services $14,190 · management and general $5,814

  • 17 · Travel

    total $19,916 · management and general $19,916

  • 19 · Conferences, conventions and meetings

    total $1,064 · management and general $1,064

  • 22 · Depreciation, depletion and amortization

    total $69,771 · program services $69,771

  • 23 · Insurance

    total $5,724 · management and general $5,724

  • 24a · Other expenses: BANK AND CREDIT CARD PR

    total $2,325 · program services $10 · management and general $2,315

  • 24b · Other expenses: TELECOMMUNICATIONS AND

    total $2,100 · management and general $2,100

  • 24c · Other expenses: POSTAGE AND SHIPPING

    total $535 · management and general $535

  • 24d · Other expenses: DUES AND SUBSCRIPTIONS

    total $145 · management and general $145

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $300,452 · end of year $280,799

  • 2 · Savings and temporary cash investments

    beginning of year $1,706,140 · end of year $1,360,381

  • 3 · Pledges and grants receivable

    beginning of year $60,805 · end of year $304,280

  • 9 · Prepaid expenses and deferred charges

    beginning of year $6,162 · end of year $5,673

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

    $348,855

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

    $81,199

  • 10c · Land, buildings and equipment, net

    beginning of year $337,427 · end of year $267,656

  • 17 · Accounts payable and accrued expenses

    beginning of year $407,302 · end of year $236,444

  • 27 · Net assets without donor restrictions

    beginning of year $2,003,684 · end of year $1,982,345

Mission and programs · 2024

Mission

THE REGISTRY'S MISSION IS TO FACILITATE RESEARCH AND ADVANCE RESEARCH TO ACCELERATE TREATMENT DEVELOPMENT FOR ALL TYPES OF FTD, A DEVASTATING NEURODEGENERATIVE DISEASE THAT STRIKES PEOPLE IN THE PRIME OF LIFE AND FOR WHICH, CURRENTLY, THERE IS NO CURE.

Activities or mission (Part I)

PROVIDE A PATIENT REGISTRY FOR THOSE AFFLICTED BY FTD, A DEVASTATING NEURODEGENERATIVE DISEASE.

  • THE GOALS OF THE REGISTRY ARE TO - EMPOWER THE COMMUNITY OF CAREGIVERS, FAMILY MEMBERS, AND PEOPLE DIAGNOSED WITH FTD - FACILITATE ENROLLMENT FOR FTD CLINICAL RESEARCH AS A CENTRALIZED, INTERNATIONAL DATABASE AND COMMUNICATION HUB- INFORM THE FTD COMMUNITY ON RESEARCH AND PARTICIPATION OPPORTUNITIES AS A TRUSTED, NEUTRAL, SCIENCE-BASED NON-PROFIT VOICE- IMPROVE THE UNDERSTANDING OF FTD AND ITS IMPACT THROUGH SURVEY-BASED, LONGITUDINAL RESEARCH WITH PERSONS DIAGNOSED, FAMILY MEMBERS, AND CAREGIVERS - ENABLE INCLUSIVE AND SECURE RESEARCH DESIGNS AS A RESEARCH PARTNER FOR REMOTE DATA COLLECTION (CONTINUED ON SCHEDULE O)- LEVERAGE RESOURCES AS A PARTNER FOR ALL STAKEHOLDERS - ACADEMIC RESEARCHERS, NON-PROFITS, GOVERNMENT, AND INDUSTRY - WHO SHARE A COMMITMENT TO IMPROVING THE QUALITY OF LIFE OF THOSE AFFECTED BY FTD

    Expenses $633,262

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Susan Dickinson

    DIRECTOR-AFTD MEMBER REPRE

    Total calculated
    $350,014
    From this org
    $0
    From related orgs
    $320,026
    Other
    $29,988
    Hours/week
    4 + 36 related

    Schedule J breakdown matched by us

    Base
    $0 + $319,630 related
    Bonus
    $0
    Other
    $0 + $396 related
    Deferred
    $0 + $9,493 related
    Nontaxable benefits
    $0 + $20,495 related
    Filer's total
    $0 + $350,014 related

  • Laura Mitic

    DIRECTOR-BLUEFIELD MEMBER

    Total calculated
    $145,000
    From this org
    $0
    From related orgs
    $145,000
    Other
    $0
    Hours/week
    4 + 20 related

  • Penny Dacks

    PRESIDENT

    Total calculated
    $244,063
    From this org
    $0
    From related orgs
    $226,491
    Other
    $17,572
    Hours/week
    10 + 30 related

    Schedule J breakdown matched by us

    Base
    $0 + $226,431 related
    Bonus
    $0
    Other
    $0 + $60 related
    Deferred
    $0 + $6,777 related
    Nontaxable benefits
    $0 + $10,795 related
    Filer's total
    $0 + $244,063 related

  • Mitch Appleson

    COO AND SECRETARY

    Total calculated
    $283,585
    From this org
    $0
    From related orgs
    $255,015
    Other
    $28,570
    Hours/week
    2 + 38 related

    Schedule J breakdown matched by us

    Base
    $0 + $254,955 related
    Bonus
    $0
    Other
    $0 + $60 related
    Deferred
    $0 + $7,798 related
    Nontaxable benefits
    $0 + $20,772 related
    Filer's total
    $0 + $283,585 related

  • Carrie Milliard

    REGISTRY DIRECTOR

    Total calculated
    $166,700
    From this org
    $149,435
    From related orgs
    $0
    Other
    $17,265
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $149,345
    Bonus
    $0
    Other
    $90
    Deferred
    $4,475
    Nontaxable benefits
    $12,790
    Filer's total
    $166,700

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. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

Provenance

Return type
form_990
Tax year
2024
Filed
10 November 2025
IRS schema version
2024v5.2
Source object
202503159349300720

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