Mission: The Association for Frontotemporal Degeneration (AFTD) envisions a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and u ... (More)
The Association for Frontotemporal Degeneration is a 501(c)(3) organization, with an IRS ruling year of 2004, and donations are tax-deductible.
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Contact Information
2700 Horizon Drive
Suite 120
King of Prussia PA 19406
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Star Rating System by Charity Navigator
Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.
Exceptional
This charity's score is 99.71, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity.
This score is calculated from two sub-scores:
Finance: 99.60 View details
Accountability & Transparency: 100.00 View details
This score represents Form 990 data from 2019. More recent filing data is available, but it has not been factored into this score, due to COVID-19's effect on this organization.
View this organization’s historical ratings.
Rating update postponed due to COVID-19's impact on this organization. View The Association for Frontotemporal Degeneration's response.
Star Rated Report
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Program Expense Ratio
83.6%
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).
This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Administrative Expenses
6.6%
As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Expenses
9.7%
This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Liabilities to Assets Ratio
9.6%
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
Fundraising Efficiency
$0.06
The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Working Capital Ratio
3.32 years
Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.
Source: IRS Form 990
Program Expense Growth
38.59%
We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.
Source: IRS Form 990
Governance
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Governance: | |
|---|---|
| Independent Voting Board Members ... (More) | |
| No Material Diversion of Assets ... (More) A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
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| Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
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| Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) | |
| Documents Board Meeting Minutes ... (More) | |
| Distributes 990 to Board Before Filing ... (More) | |
| Compensates Board ... (More) |
Policies
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
| Policies: | |
|---|---|
| Conflict of Interest ... (More) | |
| Whistleblower ... (More) | |
| Records Retention and Destruction ... (More) | |
| CEO Compensation Process ... (More) | |
| Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) |
Transparency
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.
Sources Include: IRS Form 990 and organization's website
| Transparency: | |
|---|---|
| CEO Salary Listed on 990 ... (More) | |
| Board of Directors Listed on Website ... (More) | |
| Key Staff Listed on Website ... (More) | |
| Audited Financial Statements on Website ... (More) | |
| Form 990 Available on Website ... (More) |
Additional Information
Unscored
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Total Revenue and Expenses
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Salary of Key Persons
Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Susan L-J Dickinson, Chief Executive Officer
$182,250 (2.61% of Total Expenses)
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2020
Business Master File Data
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Activities:
Activity data not reported from the IRS
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
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). (BMF affiliation code: 3)
Data Sources: IRS Forms 990
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).
Pandemic Response
This organization was impacted by COVID-19 in a way that effected their financial health in 2020. This normally would have reduced their star rating. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them, and doing this pauses our revision of their rating. Charities may submit their own pandemic responses through their nonprofit portal.
The Association for Frontotemporal Degeneration reported being impacted by COVID-19 in the following ways:
Program Delivery
How COVID-19 impacted the organization's operations financially:
The COVID-19 pandemic arrived at a time of organizational growth and infrastructure improvements for AFTD, as detailed in our 2019-2022 Strategic Plan. In spring 2020, AFTD was approved for a Paycheck Protection Program loan by the Small Business Administration, and in preparation for our July 2020 – June 2021 fiscal year, we took a conservative approach to planning our budget knowing we could leverage accumulated net assets to ensure we would not need to cut back on services or staff. AFTD’s donors and volunteers played a significant role in sustaining our work, and actual fundraising revenue for our fiscal year ending June 30, 2021 significantly exceed our budget – individual donations were up 12 percent year over year – and AFTD accumulated net assets increased during the same period. Additionally, in consultation with our Board, we opted to continue growth in targeted areas – determining that AFTD’s impact and sustainability could still benefit from key new hires.
How COVID-19 impacted the organization's delivery of programs:
For the people we serve, COVID-19 has brought complications to an already difficult journey. AFTD has responded by tailoring our services and programs to the challenges of navigating both COVID-19 and FTD, and by providing virtual opportunities for people to connect with others for support. Today, 101 AFTD-affiliated volunteers lead FTD-specific support groups across the country. These groups, which provide an opportunity for persons affected by FTD to convene with their peers to share care strategies and offer support, transitioned to Zoom. Our volunteers transitioned their support and engagement activities to virtual platforms. We created virtual Meet & Greets, enabling people new to an FTD journey to connect to the community to learn more about FTD and the resources AFTD provides. Working with AFTD’s Medical Advisory Council and other leading health professionals and researchers, we developed targeted outreach to address the unique needs of families facing FTD during the pandemic.
How this organization adapted to changing conditions caused by COVID-19:
When the pandemic emerged, AFTD worked to transition in-person activities to alternative virtual platforms, including support groups, volunteer-led outreach, and grassroots events to raise awareness about FTD and funds to advance AFTD’s mission. AFTD’s 2021 Education Conference, broadcast completely online, was attended by more than 1,200 people. The two-day conference drew an international audience of persons diagnosed, care partners, family members, and healthcare professionals. Despite the cancellation of in-person activities, AFTD’s 364 volunteers led one of the most active and successful years of activity to drive our mission. With creativity and determination, volunteers connected with their peers for support, engaged with healthcare professionals and care service providers, and participated in initiatives that drive AFTD’s mission forward.
Innovations the organization intends to continue permanently after the pandemic:
Providing opportunities to help people foster connections and build a personal network of support is a vital part of AFTD’s work. Where certain limitations – time, distance, and cost – might have previously prohibited people affected by FTD accessing such support, web-based tools such as Zoom now enable more people to convene with their peers. Feedback from participants in our 2021 Education Conference indicated that more people were able to engage this year’s event, due to the virtual broadcast. Participants found value in being able to use interactive features, such as a live chat and Q&A. With input from volunteers and the people we serve, AFTD is assessing ways to meaningfully meet the evolving needs of our community in the near future and for the long term – balancing the reach and accessibility of virtual events, with the unique opportunities for connection presented by in-person events, where they can be held safely in accordance with local and federal guidelines.
Historical Ratings
| Date Published | Form 990 FYE | Overall Score | Overall Rating |
| Rating Version: 2.1 | |||
| 3/1/2020 | 2019 | 99.71 | |
| 5/1/2019 | 2018 | 97.82 | |
| 3/1/2019 | 2018 | 94.59 | |
This organization received multiple star ratings within this fiscal year, due to an update to its Accountability and Transparency data and/or the receipt of an amended Form 990. | |||
| 11/1/2018 | 2017 | 96.35 | |
| 5/1/2018 | 2017 | 93.85 | |
| 6/1/2017 | 2016 | 94.52 | |
| 9/1/2016 | 2015 | 93.48 | |
Impact & Results
This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
Impact & Results Score
Not Currently Scored
The Association for Frontotemporal Degeneration cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Do you work at The Association for Frontotemporal Degeneration? Join the waitlist for an updated Impact & Results score.
Additional Information
Unscored
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Largest Programs
The Association for Frontotemporal Degeneration reported its three largest programs on its FY 2020 Form 990 as:
$4,209,208
Spent in most recent FY
67%
Percent of program expenses
RESEARCH - EACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSTICS AND THE FIRST THERAPEUTICS FOR FTD. TO THAT END, AFTD AWARDED MULTIPLE GRANTS DURING ... (More)
$1,103,988
Spent in most recent FY
17%
Percent of program expenses
EDUCATION AND SUPPORTSUPPORT - AFTD UNDERSTANDS THE CHALLENGES THAT FTD PRESENTS TO PATIENTS AND THEIR FAMILIES, AND WORKS HARD TO DEVELOP UNIQUE RESOURCES AND INFORMATION THAT WILL IMPROVE QUALITY OF ... (More)
$903,598
Spent in most recent FY
14%
Percent of program expenses
ADVOCACY AND AWARENESS - OUR COMMUNITY IS LEADING THE WAY TO SEND THE MESSAGE THAT DEMENTIA IS A MULTI-FACETED DISEASE THAT CAN OCCUR AT A YOUNG AGE AND BEGIN WITH SYMPTOMS UNRELATED TO MEMORY. AFTD I ... (More)
Leadership & Adaptability
This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Leadership & Adaptability Score
Not Currently Scored
The Association for Frontotemporal Degeneration is currently not eligible for a Leadership & Adaptability score because we have not received its L&A survey responses.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that the organization has not yet submitted data for evaluation.
Additional Information
Unscored
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Organization Leadership
Susan L-J Dickinson
Chief Executive Officer
David Pfeifer
Chair
Culture & Community
This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.
Culture & Community Score
Not Currently Scored
The Association for Frontotemporal Degeneration is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Culture & Community Report
Unscored
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Constituent Feedback
Constituent Feedback and Listening Practice data are not available for this organization. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.
Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We award every nonprofit that completes the Candid survey full credit for this Beacon, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. Although the data is not evaluated for quality at this time, future iterations of this Beacon will include third party or other data that will serve to validate the information provided by the nonprofit.
Analysis and Research
Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.
Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.
