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Kng of Prussa PA | IRS ruling year: 2004 | EIN: 41-2073220
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 (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. (Less)
Great
This charity's score is 100%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores: 90% Accountability & Finance, 10% Leadership & Adaptability. Learn more about our criteria and methodology.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
| 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 | |
The IRS is significantly delayed in processing nonprofits' annual tax filings (Forms 990). As a result, the Accountability & Finance score for The Association for Frontotemporal Degeneration is outdated and the overall rating may not be representative of its current operations. Please check with the charity directly for any questions you may have.
The Association for Frontotemporal Degeneration has earned a 100% for the Accountability & Finance beacon. See the metrics below for more information.
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
This Accountability & Finance score represents IRS Form 990 data up until FY 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.
Rating update postponed due to COVID-19's impact on this organization. View The Association for Frontotemporal Degeneration's response.
Learn more
Full Credit
Partial Credit
No Credit
Not Applicable
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Independent Voting Board Members ... (More) The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters. Our analysts check the Form 990 to determine if the independent Board members are a voting majority and also at least five in number. (Less) | |
| 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) Making loans to related parties such as key officers, staff, or Board members, is not standard practice in the sector as it may divert the charity's funds away from its charitable mission and can lead to real and perceived conflict-of-interest problems. This practice is discouraged by sector trade groups which point to the Sarbanes-Oxley Act when they call for charities to refrain from making loans to directors and executives. And the IRS is concerned enough with the practice that it requires charities to disclose on their Form 990 any loans to or from current and former officers, directors, trustees, key employees, and other "disqualified persons." Furthermore, some state laws go so far as to prohibit loans to board members and officers. And although employees and trustees are permitted to make loans to charities, this practice can also result in real and/or perceived conflict of interest problems for the charity. Furthermore, it is problematic because it is an indicator that the organization is not financially secure. (Less) | |
| Documents Board Meeting Minutes ... (More) An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference. Charities are not required to make their Board meeting minutes available to the public. As such, we are not able to review and critique their minutes. For this performance metric, we are checking to see if the charity reports on its Form 990 that it does keep those minutes. In the future, we will also track and rate whether or not a charity keeps minutes for its committee meetings. (Less) | |
| Distributes 990 to Board Before Filing ... (More) Providing copies of the Form to the governing body in advance of filing is considered a best practice, as it allows for thorough review by the individuals charged with overseeing the organization. The Form 990 asks the charity to disclose whether or not it has followed this best practice. If the charity has not distributed its Form 990 to the board before filing, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| Does not Compensate Board Members ... (More) The IRS requires that any compensation paid to members of the charity's governing body be listed on the Form 990. Furthermore, all members of the governing body need to be listed whether or not they are compensated. It is not unusual for some members of the board to have compensation listed. The executive director of the organization frequently has a seat on the board, for instance, and is compensated for being a full time staff member. However, it is rare for a charity to compensate individuals only for serving on its Board of Directors. Although this sort of board compensation is not illegal, it is not considered a best practice. (Less) | |
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
| Conflict of Interest ... (More) Such a policy protects the organization, and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer or director of the organization. Charities are not required to share their conflict of interest policies with the public. Although we can not evaluate the substance of its policy, we can tell you if the charity has one in place based on the information it reports on its Form 990. If the charity does not have a Conflict of Interest policy, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| Whistleblower ... (More) This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report any financial mismanagement. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. (Less) | |
| Records Retention and Destruction ... (More) Such a policy establishes guidelines for handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promotes data integrity. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. If the charity does not have a Records Retention and Destruction Policy, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| CEO Compensation Process ... (More) This process indicates that the organization has a documented policy that it follows year after year. The policy should indicate that an objective and independent review process of the CEO's compensation has been conducted which includes benchmarking against comparable organizations. We check to be sure that the charity has reported on its Form 990 its process for determining its CEO pay. (Less) | |
| 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) | |
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
| CEO Salary Listed on 990 ... (More) Charities are required to list their CEO's name and compensation on the Form 990. Our analysts check to be sure that the charities complied with the Form 990 instructions and included this information in their filing. (Less) | |
| Board of Directors Listed on Website ... (More) Our analysts check to see if the charity lists Board members on its website. Publishing this information enables donors and other stakeholders to ascertain the make up of the charity's governing body. This enables stakeholders to report concerns to the Board. Charity Navigator does not cross-check the Board members listed on the website with that reported on the Form 990, because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's Board members may have changed, and the charity typically reflects those more recent changes on the website. (Less) | |
| Key Staff Listed on Website ... (More) It is important for donors and other stakeholders to know who runs the organization day-to-day. Charity Navigator does not cross-check the leadership listed on the website with that reported on the Form 990 because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's leadership may have changed and the charity typically reflects those more recent changes on the website. In other words, since the Form 990 isn't especially timely, it can not be used to verify the leadership information published on the charity's site. (Less) | |
| Audited Financial Statements Listed on Website ... (More) We check the charity's website to see if it has published its audited financial statements for the fiscal year represented by the most recently filed IRS Form 990. It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. We currently rate charities on whether or not they publish their audit on their website. (Less) | |
| Form 990 Available on Website ... (More) We check the charity's website to see if it has published its most recently filed IRS Form 990 (a direct link to the charity's 990 on an external site is sufficient). It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. (Less) | |
Full CreditPartial CreditNo CreditNot ApplicableLiabilities to Assets Ratio - 9.60% - 10/10 ptsLiabilities to Assets Ratio - 9.60% - 10/10 pts
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
Working Capital Ratio - 3.32 years - 10/10 ptsWorking Capital Ratio - 3.32 years - 10/10 pts
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
Fundraising Efficiency - $0.06 - 10/10 ptsFundraising Efficiency - $0.06 - 10/10 pts
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
Administrative Expense Ratio - 6.60% - 10/10 ptsAdministrative Expense Ratio - 6.60% - 10/10 pts
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 Expense Ratio - 9.70% - 10/10 ptsFundraising Expense Ratio - 9.70% - 10/10 pts
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
Program Expense Ratio - 83.60% - 9.6/10 ptsProgram Expense Ratio - 83.60% - 9.6/10 pts
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
Program Expense Growth - 38.59% - 10/10 ptsProgram Expense Growth - 38.59% - 10/10 pts
Organizations that demonstrate consistent annual growth in program expenses are able to outpace inflation and thus sustain their programs year to year. These organizations also supply givers with greater confidence by maintaining broad public support for their programs. 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
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
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
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)
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 search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (The Association for Frontotemporal Degeneration) or EIN (412073220) in the 'Search Term' field.
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.
Not Currently Scored
The Association for Frontotemporal Degeneration cannot currently be evaluated by our 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.
Learn More
The Association for Frontotemporal Degeneration reported its three largest programs on its FY 2019 Form 990 as:
Spent in most recent FY
Percent of program expenses
Research
Spent in most recent FY
Percent of program expenses
Education and Support
Spent in most recent FY
Percent of program expenses
Advocacy and Awareness
The Association for Frontotemporal Degeneration has earned a 100% for the Culture & Community beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Learn more
Full CreditPartial CreditNo CreditNot ApplicableConstituent Feedback - Data Available - 100/100 ptsConstituent Feedback - Data Available - 100/100 pts
30% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. 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.
Who are the people you serve with your mission? Describe briefly.
AFTD works every day to meet the needs of all who have been impacted by frontotemporal degeneration (FTD), including persons who are diagnosed, care partners and caregivers, and family members. We work to provide education and resources to healthcare professionals about the unique nature and occurrence of FTD to help improve diagnosis and the quality of life of persons affected by the disease. AFTD funds research to lead to the discovery of biomarkers, tool, and technologies that can help diagnose, monitor, and treat FTD.
How is your organization collecting feedback from the people you serve?
SMS text surveys, Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Case management notes, Constituent (client or resident, etc.) advisory committees, Suggestion box/email
How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve
With whom does your organization share the feedback you got from the people you serve?
The people we serve, Our staff, Our board, Our funders, Our community partners
How has asking for feedback from the people you serve changed your relationship with them or shifted power - over decisions, resources, rules or in other ways - to them?
AFTD’s work is guided by a strategic plan, which is developed with input from the Board of Directors, staff, and members of the community. We consider the perspectives of the people we serve to be an essential component of shaping the plan, establishing goals to guide our work over a three-year period. We solicit feedback from our constituents as we provide programs and services throughout the year, adjusting our work and goals to meet the evolving needs of our community. In fall 2020, we formally established the Persons with FTD Advisory Council, which currently includes seven people diagnosed with an FTD disorder and is facilitated by AFTD staff members. The council plays a vital role in shaping AFTD’s efforts to empower those who are diagnosed to be their own advocates.
What challenges does your organization face in collecting feedback from the people you serve?
We don't have any major challenges to collecting feedback
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
In response to the COVID-19 pandemic, AFTD quickly shifted affiliated in-person support groups to an online platform that enabled people who had previously been unable to attend – due to time, location, or other personal constraints – to convene with their peers. AFTD’s website can now be viewed in Spanish, and we are working to translate our essential informational resources to facilitate greater awareness about FTD disorders and ways to find support. Additionally, we now provide translation services on our HelpLine, enabling greater accessibility. To help alleviate some of the financial burden of an FTD diagnosis, worsened by the pandemic, AFTD expanded the Comstock Grants program in FY22, enabling 54% more people to receive a Respite or Quality of Life grant, worth up to $500 each.
Equity Practices - Data Available - 100/100 ptsEquity Practices - Data Available - 100/100 pts
70% of beacon score
This organization's score of 100 is a passing score. The organization reported that it is implementing 12 Equity Practices. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Equity Practices (6/7) | |
|---|---|
We review compensation data across the organization (and by staff levels) to identify disparities by race. | |
We ask team members to identify racial disparities in their programs and/or portfolios. | |
We analyze disaggregated data and root causes of race disparities that impact the organization/'s programs, portfolios, and the populations served. | |
We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support. | |
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders. | |
We disaggregate data by demographics, including race, in every policy and program measured | |
We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization. | |
Equity Policies and Procedures (6/7) | |
|---|---|
We use a vetting process to identify vendors and partners that share our commitment to race equity. | |
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions. | |
We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization. | |
We have community representation at the board level, either on the board itself or through a community advisory board. | |
We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability. | |
We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team. | |
We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization. | |
The Association for Frontotemporal Degeneration has earned a 100% for the Leadership & Adaptability beacon. See the metrics below for more information.
This beacon 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.
Learn more
Full CreditPartial CreditNo CreditNot ApplicableMission - 10/10 ptsMission - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
As the leading national organization focused exclusively on frontotemporal degeneration (FTD), our mission is to improve the quality of life of people affected by FTD and drive research to a cure. Every day, we work to provide information, education, and support to persons diagnosed with FTD and their families; increase awareness of FTD among medical and healthcare professionals on how to improve patient care; promote a greater understanding among the general public about the nature and occurrence of FTD and the needs of those who are coping with it; advocate with public officials to promote programs that provide appropriate, affordable, and high-quality, long-term health care and social services; and support research that can lead to better diagnostic processes, therapies, and a cure for FTD.
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
FTD is the most common dementia for people under 60 – the age of onset ranges from 21 to 80, though the majority of cases occur between 45 and 64. As many in the medical community remain unfamiliar with it, FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis. The disease causes irreversible, progressive changes in behavior, personality, language, and movement, and there are currently no FDA-approved, disease-modifying treatments or therapies available. AFTD envisions a world with compassionate care, effective support, and a future free of FTD.
Source: Nonprofit submitted responses
Goals - 20/20 ptsGoals - 20/20 pts
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Advance early and accurate diagnosis and the development of treatments.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: Advance quality care and support.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Three: Strengthen AFTD’s position as the leading authority on FTD.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
As part of AFTD's current Strategic Plan, we are investing in our staff to maximize engagement and foster professional growth and opportunities for leadership. As part of this work, we developed and implemented an ongoing, monthly management learning series guided by an external Human Resources consultant. The series provides training on best practices in performance management, strategies for managing team members in a hybrid work environment, and improving and refining professional communication skills. AFTD also offers all staff professional educational and development opportunities through an online learning platform, and diversity, equity, and inclusion (DEI) initiatives are ongoing, and include inclusive leadership training for managers, and monthly manager leadership and development training. Our new Strategic Plan, which will be implemented beginning July 1, 2022, will expand and deepen this work for staff and Board over the next three years.
Mobilizing for Mission - 15/15 ptsMobilizing for Mission - 15/15 pts
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
AFTD collaborates with a growing number of peer nonprofit organizations, such as the Alzheimer’s Drug Discovery Foundation and Target ALS, to invest in and facilitate innovative research to address the spectrum of FTD disorders and related dementias. Through multiple grant-making initiatives, AFTD and our partners are accelerating biomarker discovery and drug development to bring forward novel therapies to address neurodegenerative disease. Our staff and national network of volunteers are engaging with healthcare professionals, service providers, state and national policymakers, and key community stakeholders to provide education about FTD and information about AFTD’s resources, which can improve the quality of life for all who are facing this disease.
Adaptability Story - 30/30 ptsAdaptability Story - 30/30 pts
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
For the people we serve, COVID-19 further complicated an already difficult journey. AFTD responded by tailoring our services and programs to the challenges of navigating both COVID-19 and FTD. In March 2020, AFTD transitioned typical in-person activities to alternative virtual platforms, including our support groups, our 2020 and 2021 Education Conferences, and the volunteer-led outreach and grassroots events that help raise awareness about FTD and funds to advance our mission. Today, there are 101 AFTD-affiliated volunteers leading FTD-specific support groups across the country, which provide an opportunity for persons affected by FTD to convene with their peers to share care strategies and offer support. Virtual Meet & Greet opportunities are now offered to enable people new to the 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. In 2021, more than 360 AFTD volunteers led one of the most active and successful years of engagement 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. With input from volunteers and the people we serve, AFTD continues to assess ways to meaningfully meet the evolving needs of our community in the near future and for the long term. We will continue to consider the reach and accessibility of virtual events, along with opportunities for in-person events where they can be held safely in accordance with local, national, and federal guidelines.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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