Totals
- Total revenue
- $1,600,782
- Total expenses
- $759,009
- Contributions and grants received
- $1,579,800
- Grants paid
- $0
- Program service revenue
- $0
- Investment income
- $20,982
- Other revenue
- $0
- Total assets, end of year
- $2,043,499
- Total liabilities, end of year
- $116,119
- Net assets or fund balances, end of year
- $1,927,380
- Program services expenses (Part IX)
- $735,444
- Management and general expenses
- $23,565
- Fundraising expenses
- $0
- Program service expenses (Part III)
- $735,444
Program services were 96.9% 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
$1,150,000
-
1e · Government grants (contributions)
$223,260
-
1f · All other contributions, gifts and grants
$206,540
-
3 · Investment income
total $20,982 · excluded $20,982
Functional expenses
Part IX, the statement of functional expenses.
-
7 · Other salaries and wages
total $370,450 · program services $368,676 · management and general $1,774
-
9 · Other employee benefits
total $63,500 · program services $60,296 · management and general $3,204
-
10 · Payroll taxes
total $29,859 · program services $28,831 · management and general $1,028
-
11c · Fees: accounting
total $20,800 · program services $20,800
-
11g · Fees: other
total $38,428 · program services $38,428
-
12 · Advertising and promotion
total $2,876 · program services $2,876
-
13 · Office expenses
total $1,741 · management and general $1,741
-
14 · Information technology
total $204,008 · program services $204,008
-
17 · Travel
total $11,712 · program services $11,021 · management and general $691
-
19 · Conferences, conventions and meetings
total $115 · program services $115
-
23 · Insurance
total $5,679 · management and general $5,679
-
24a · Other expenses: TELECOMMUNICATIONS AND
total $4,462 · management and general $4,462
-
24b · Other expenses: RECRUITING EXPENSES
total $3,775 · management and general $3,775
-
24c · Other expenses: BANK AND CREDIT CARD PR
total $706 · program services $30 · management and general $676
-
24d · Other expenses: POSTAGE AND SHIPPING
total $545 · program services $163 · management and general $382
-
24e · All other expenses
total $353 · program services $200 · management and general $153
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,060,272 · end of year $269,495
-
2 · Savings and temporary cash investments
end of year $1,370,986
-
3 · Pledges and grants receivable
beginning of year $61,248 · end of year $276,330
-
9 · Prepaid expenses and deferred charges
beginning of year $1,271 · end of year $1,188
-
10a · Land, buildings and equipment: cost or other basis
$327,907
-
10b · Land, buildings and equipment: accumulated depreciation
$202,407
-
10c · Land, buildings and equipment, net
beginning of year $0 · end of year $125,500
-
17 · Accounts payable and accrued expenses
beginning of year $37,184 · end of year $116,119
-
27 · Net assets without donor restrictions
beginning of year $1,000,607 · end of year $1,927,380
-
28 · Net assets with donor restrictions
beginning of year $85,000 · end of year $0
Mission and programs · 2022
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 $735,444
As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Susan DickinsonSUSAN DICKINSON
DIRECTOR-AFTD MEMBER REPRESENTATIVE
- Total calculated
- $330,335
- From this org
- $0
- From related orgs
- $302,707
- Other
- $27,628
- Hours/week
- 4 + 36 related
Schedule J breakdown matched by us
- Base
- $0 + $302,593 related
- Bonus
- $0
- Other
- $0 + $114 related
- Deferred
- $0 + $8,745 related
- Nontaxable benefits
- $0 + $18,883 related
- Filer's total
- $0 + $330,335 related
-
Rodney PearlmanRODNEY PEARLMAN
DIRECTOR
- Total calculated
- $368,000
- From this org
- $0
- From related orgs
- $368,000
- Other
- $0
- Hours/week
- 4 + 40 related
Schedule J breakdown matched by us
- Base
- $0 + $368,000 related
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $0
- Filer's total
- $0 + $368,000 related
-
Penny DacksPENNY DACKS
PRESIDENT
- Total calculated
- $223,458
- From this org
- $0
- From related orgs
- $207,660
- Other
- $15,798
- Hours/week
- 10 + 30 related
Schedule J breakdown matched by us
- Base
- $0 + $207,546 related
- Bonus
- $0
- Other
- $0 + $114 related
- Deferred
- $0 + $5,949 related
- Nontaxable benefits
- $0 + $9,849 related
- Filer's total
- $0 + $223,458 related
-
Christine StevensCHRISTINE STEVENS
CFO
- Total calculated
- $206,898
- From this org
- $0
- From related orgs
- $180,146
- Other
- $26,752
- Hours/week
- 4 + 36 related
Schedule J breakdown matched by us
- Base
- $0 + $180,112 related
- Bonus
- $0
- Other
- $0 + $34 related
- Deferred
- $0 + $5,349 related
- Nontaxable benefits
- $0 + $21,403 related
- Filer's total
- $0 + $206,898 related
-
Mitch ApplesonMITCH APPLESON
COO AND SECRETARY
- Total calculated
- $181,141
- From this org
- $0
- From related orgs
- $169,049
- Other
- $12,092
- Hours/week
- 2 + 38 related
Schedule J breakdown matched by us
- Base
- $0 + $168,973 related
- Bonus
- $0
- Other
- $0 + $76 related
- Deferred
- $0 + $5,539 related
- Nontaxable benefits
- $0 + $6,553 related
- Filer's total
- $0 + $181,141 related
-
Dianna Wheaton Thru Jan 2023DIANNA WHEATON THRU JAN 2023
REGISTRY DIRECTOR
- Total calculated
- $167,668
- From this org
- $118,188
- From related orgs
- $0
- Other
- $49,480
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $118,175
- Bonus
- $0
- Other
- $13
- Deferred
- $4,181
- Nontaxable benefits
- $45,299
- Filer's total
- $167,668
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.
-
BLUEFIELD PROJECT TO CURE FROTOTEMPORAL DEGENERATION
501(C)(3) · MEDICAL RESEARCH AND FUNDING · CA
-
THE ASSN FOR FRONTOTEMPORAL DEGENERATION
501(C)(3) · MEDICAL RESEARCH AND FUNDING · PA
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 13 November 2023
- IRS schema version
- 2022v5.0
- Source object
- 202343189349307484
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