Ftd Disorders Registry Llc
- Assets
- $1.1m
- Revenue
- $727.7k
- Investments
- $0.0
- Employees
- 0
- Location
- King Of Prussia, PA
- Founding
- 03/2016
- Data as of
- 06/2022
- EIN
- 47-3601782
Organization Overview
Ftd Disorders Registry Llc is located in King Of Prussia, PA. The organization was established in 2016. According to its NTEE Classification (G83) the organization is classified as: Alzheimers Disease, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Ftd Disorders Registry Llc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 06/2022, Ftd Disorders Registry Llc generated $727.7k in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 10.7% each year . All expenses for the organization totaled $734.3k during the year ending 06/2022. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
PROVIDE A PATIENT REGISTRY FOR THOSE AFFLICTED BY FTD, A DEVASTATING NEURODEGENERATIVE DISEASE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Dianna Wheaton Registry Director | 40 | $127,211 | |
Susan Dickinson Director-Aftd Member Representative | OfficerTrustee | 4 | $0 |
Penny Dacks President | Officer | 10 | $0 |
Mitch Appleson Eff March 2022 COO And Secretary | Officer | 2 | $0 |
Christine Stevens CFO | Officer | 4 | $0 |
Rodney Pearlman Director | Trustee | 4 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $350,000 |
| Government grants | $220,600 |
| All other contributions, gifts, grants, and similar amounts not included above | $157,075 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $727,675 |
| Total Program Service Revenue | $0 |
| Investment income | $42 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $727,717 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $347,961 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $62,991 |
| Payroll taxes | $28,458 |
| Fees for services: Management | $10,072 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $19,110 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $0 |
| Advertising and promotion | $2,701 |
| Office expenses | $5,285 |
| Information technology | $197,386 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $7,446 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $33,734 |
| Insurance | $4,588 |
| All other expenses | $628 |
| Total functional expenses | $734,316 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,060,272 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $61,248 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $1,271 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $1,122,791 |
| Accounts payable and accrued expenses | $37,184 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $37,184 |
| Net assets without donor restrictions | $1,000,607 |
| Net assets with donor restrictions | $85,000 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $1,122,791 |
Grants Recieved
Over the last fiscal year, we have identified 3 grants that Ftd Disorders Registry Llc has recieved totaling $502,304.
| Awarding Organization | Amount |
|---|---|
Mayo Clinic Rochester, MN PURPOSE: SUPPORT CHARITABLE PROGRAMS | $197,304 |
Rainwater Charitable Foundation Fort Worth, TX PURPOSE: TAUOPATHY RESEARCH | $155,000 |
The Association For Frontotemporal Degeneration King Of Prussia, PA PURPOSE: FTD PATIENT REGISTRY | $150,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Alzheimers Foundation Of America Inc New York, NY | $39,937,274 | $14,859,921 |
Coalition Of New York State Cohoes, NY | $1,199,454 | $4,999,250 |
Alzheimers Disease And Related Disorders New York City Inc New York, NY | $4,860,903 | $6,165,848 |
The Long Island Alzheimers And Dementia Center Westbury, NY | $1,943,694 | $1,743,458 |
Creutzfeldt-Jakob Disease Foundation Inc Akron, OH | $5,032,702 | $2,551,633 |
The Mertz Charitable Trust Pittsburgh, PA | $0 | $180,463 |
Ftd Disorders Registry Llc King Of Prussia, PA | $1,122,791 | $727,717 |
Alzheimers Disease Resourcecenter Inc East Islip, NY | $2,273,072 | $1,512,511 |
Ohio Council For Cognitive Health New Albany, OH | $666,551 | $502,328 |
Jewish Senior Life Community Services Inc Rochester, NY | $1,086,635 | $159,394 |
Carol Strawn Center Newark, OH | $486,058 | $0 |
Michael T And Majorie V Gasparik Foundation West Caldwell, NJ | $2,276,624 | $194,384 |