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Health : Diseases, Disorders, and Disciplines

The Association for Frontotemporal Degeneration

Find help. Share hope.

99.71

2700 Horizon Drive Suite 120
King of Prussia, PA 19406
tel: (866) 507-7222   Web Site
EIN: 41-2073220

Board Leadership
David Pfeifer
Chair

CEO
Susan L-J Dickinson
Chief Executive Officer

Charity Navigator

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  Score
(out of 100) 		Rating
Overall Score & Rating 99.71
  Financial 99.60
  Accountability & Transparency 100.00
This rating was published 03/01/2020 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?

The Association for Frontotemporal Degeneration (AFTD) envisions a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented. Our mission is to improve the quality of life of people affected by FTD and drive research to a cure. We work every day to advance research, awareness, support, education, and advocacy. We value knowledge, collaboration, respect, dignity, and compassion. These values are core to our ability to lead a network of caregivers, persons diagnosed, medical professionals and government to forge change that will deliver our mission and achieve our vision.

The Association for Frontotemporal Degeneration (AFTD) envisions a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented. Our mission is to improve the quality of life of people affected by FTD and drive research to a cure. We work every day to advance research, awareness, support, education, and advocacy. We value knowledge, collaboration, respect, dignity, and compassion. These values are core to our ability to lead a network of caregivers, persons diagnosed, medical professionals and government to forge change that will deliver our mission and achieve our vision.

Learn more about how we calculate the overall score and rating.

Financial

99.60

Accountability & Transparency

100.00

This rating was published 03/01/2020 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)		 83.6%
  Administrative Expenses 6.6%
  Fundraising Expenses 9.7%
  Fundraising Efficiency $0.06
  Working Capital Ratio (years) 3.32
  Program Expenses Growth 38.6%
  Liabilities to Assets 9.6%
All data for Financial Performance Metrics calculations was provided by The Association for Frontotemporal Degeneration on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by The Association for Frontotemporal Degeneration on recent 990s filed with the IRS.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Highly Rated

Charity Name & State Overall Score Overall Rating
The Association for Frontotemporal Degeneration (PA) 99.71
Massachusetts Down Syndrome Congress (MA) 89.03
Immune Deficiency Foundation (MD) 93.27
Creutzfeldt-Jakob Disease Foundation (OH) 93.66
Donate Life America (VA) 92.46

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $7,108,164
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $1,810,899
   Related Organizations $0
   Government Grants $0
Total Contributions $8,919,063
   Program Service Revenue $150,345
Total Primary Revenue $9,069,408
   Other Revenue $72,535
TOTAL REVENUE $9,141,943
   
EXPENSES  
   Program Expenses $5,895,457
   Administrative Expenses $486,634
   Fundraising Expenses $599,743
TOTAL FUNCTIONAL EXPENSES $6,981,834
   
Payments to Affiliates $0
Excess (or Deficit) for the year $2,160,109
   
Net Assets $19,122,906

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research $4,222,641 71.6%
Education and Support $927,852 15.7%
Advocacy and Awareness $744,964 12.6%

Ratings History
The Association for Frontotemporal Degeneration has received 5 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-06 03/01/2020 99.71
2018-06 05/01/2019 97.82
2018-06 03/01/2019 94.59
2017-06 11/01/2018 96.35
2017-06 05/01/2018 93.85
2016-06 06/01/2017 94.52
2015-06 09/01/2016 93.48

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 41-2073220
Name in IRS Master File THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
NTEE Code H12
NTEE Classification Fund Raising and/or Fund Distribution
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date January, 2004
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End June
IRS Forms 990
(provided courtesy of Foundation Center)		 (Log In or Register Now to View Forms 990!)
  • June, 2018
  • June, 2017
  • June, 2016
  • June, 2015
  • June, 2014
Compensation % of Expenses Paid to Title
$182,250 2.61% Susan L-J Dickinson Chief Executive Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
The Association for Frontotemporal Degeneration (PA) 99.71
HelpMeSee (NY) 88.94
International OCD Foundation (MA) 90.88
National MPS Society (NC) 99.16
National Hemophilia Foundation (NY) 87.54

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

The Association for Frontotemporal Degeneration
2700 Horizon Drive
Suite 120
King of Prussia, PA 19406
tel: (866) 507-7222
EIN: 41-2073220

Visit Web Site

Board Leadership

David Pfeifer
Chair

CEO

Susan L-J Dickinson
Chief Executive Officer

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