Program areas at The FTD Disorders Registry LLC
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
Who funds The FTD Disorders Registry LLC
Grants from foundations and other nonprofits
Personnel at The FTD Disorders Registry LLC
| Name | Title | Compensation | Date of data |
|---|
| Susan L-J Dickinson | Managing Member | $0 | 2024-11-13 |
| Mitch Appleson, CPA, MBA | Chief Operating Officer | $0 | 2024-10-24 |
| Christine Stevens, MBA | Chief Financial Officer | $0 | 2024-10-24 |
| Carrie Milliard | Director | $76,816 | 2024-10-24 |
| Dianna Wheaton | Registry Director | $118,188 | 2023-06-30 |
| ...and 3 more key personnel |
Financials for The FTD Disorders Registry LLC
| Revenues | FYE 06/2024 | FYE 06/2023 | % Change |
|---|
| Total grants, contributions, etc. | $946,443 | $1,579,800 | -40.1% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $85,154 | $20,982 | 305.8% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | $0 | $0 | - |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $0 | $0 | - |
| Total revenues | $1,031,597 | $1,600,782 | -35.6% |
Organizations like The FTD Disorders Registry LLC
| Organization | Type | Location | Revenue |
|---|
| Bateman Horne Center of Excellence | 501(c)(3) | Salt Lake City, UT | $2,453,125 |
| Epilepsy Foundation of Greater Los Angel | 501(c)(3) | Los Angeles, CA | $1,736,089 |
| Alzheimer's Disease Resource Center (ADRC) | 501(c)(3) | East Islip, NY | $593,639 |
| Central Minnesota Dementia Community Action Network | 501(c)(3) | Saint Cloud, MN | $392,685 |
| Brain Injury Association of Michigan | 501(c)(3) | Brighton, MI | $501,224 |
| Sepsis Alliance | 501(c)(3) | San Diego, CA | $2,227,105 |
| Wisconsin Institute for Healthy Aging | 501(c)(3) | Madison, WI | $1,056,859 |
| Alzheimers Tennessee | 501(c)(3) | Knoxville, TN | $1,874,798 |
| Brain Injury Association of NC | 501(c)(3) | Raleigh, NC | $657,223 |
| Parkinson Wellness Recovery RecoveryPWR | 501(c)(3) | Tucson, AZ | $2,441,835 |
Data update history
January 7, 2025
Posted financials
Added Form 990 for fiscal year 2024
October 24, 2024
Updated personnel
Identified 3 new personnel
July 27, 2024
Used new vendors
Identified 1 new vendor, including
January 5, 2024
Posted financials
Added Form 990 for fiscal year 2023
December 26, 2023
Received grants
Identified 2 new grant, including a grant for $221,422 from Mayo Clinic Nonprofit Types
Grantmaking organizationsDisease research fundraisersProfessional associationsDisease-focused nonprofitsChapter / child organizationsCharities
Issues
HealthDiseases and disordersMedical disciplinesPublic policy
Characteristics
Conducts researchReceives government fundingTax deductible donationsAccepts online donations
General information
- Address
- 2700 Horizon Dr 120
- King of Prussia, PA 19406
- Metro area
- Philadelphia-Camden-Wilmington, PA-NJ-DE-MD
- County
- Montgomery County, PA
- Website URL
- ftdregistry.org/Â
- Phone
- (267) 514-7221
IRS details
- EIN
- 47-3601782
- Fiscal year end
- June
- Taxreturn type
- Form 990
- Year formed
- 2015
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G90: Medical Disciplines
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Subordinate organization
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current - Awaiting Reporting
- FTB status revoked
- Not revoked
- AG Registration Number
- CT0242557
- FTB Entity ID
- None yet
- AB 488 data last updated ("as-of") date
- 2025-02-19
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