The Association for Frontotemporal Degeneration

FIND HELP - SHARE HOPE

aka AFTD   |   King of Prussia, PA   |  www.theaftd.org

Mission

AFTD’s 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. We promote and fund research toward diagnosis, treatment and a cure. Awareness. We stimulate greater public awareness and understanding. Support. We provide information and support to those directly impacted. Education. We promote and provide education for healthcare professionals. Advocacy. We advocate for research and appropriate, affordable services.

Ruling year info

2004

Chief Executive Officer

Susan Dickinson

Main address

2700 Horizon Drive Suite 120

King of Prussia, PA 19406 USA

Show more contact info

Formerly known as

The Association for Frontotemporal Dementias

EIN

41-2073220

NTEE code info

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (H01)

Brain Disorders (G48)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Frontotemporal degeneration (FTD) is the most common dementia for people under 60, bringing irreversible, progressive changes in behavior, personality, language and movement. FTD affects more than 60,000 Americans, and many more throughout the world. There are currently no disease-modifying treatments and there is no cure.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Comstock Grants

FTD can impose severe economic burden on persons diagnosed, care partners, and family members. Through our Comstock Grants program, AFTD provides direct assistance to people who are living with a diagnosis. The Quality of Life grant is intended to help people living with an FTD disorder access services or support that will improve their quality of life. Respite grants help full-time, unpaid care partners attend to their own well-being through services that support their emotional, psychological, and physical well-being. To help with the cost of travel, lodging and conference fees, AFTD offers financial assistance for people with FTD or their immediate family members to attend an FTD-related education event, including the AFTD Annual Education Conference.

During the 2021 fiscal year, AFTD distributed 303 Comstock Grants to help people in need.

Population(s) Served
Adults

AFTD works to develop unique resources that offer information and guidance for people diagnosed with FTD and their families.

Our HelpLine, accessible via email and by phone, provides a means of direct guidance to people seeking more information about FTD or help to navigate a diagnosis. In FY2021, the HelpLine aided 2,383 people, and AFTD now offers translation services to enable greater accessibility to all who are facing a diagnosis.

We provide a network of affiliated support groups, facilitated by trained volunteers, to provide a means of connection and assistance for people impacted by FTD. During 2021, 93 AFTD support group volunteers led 72 groups, primarily via Zoom, enabling greater connectivity for people across the country.

Each year, we publish multiple resources highlighting current events, and providing updates about FTD research, resources, and engagement opportunities. In 2021, AFTD began offering a selection of our core informational materials in Spanish.

Population(s) Served
Adults

AFTD is advancing the science of FTD by investing in ambitious research initiatives and building strategic partnerships, driving biomarker discovery to improve diagnosis and facilitate drug development, supporting research to understand the underlying causes of neurodegeneration, and enabling investigators to study disease-modifying therapeutic interventions.

We partner with organizations such as the Alzheimer’s Drug Discovery Foundation (ADDF), Target ALS, and CurePSP to facilitate dynamic research collaborations among industry professionals, academia, and peer nonprofit organizations to drive therapeutic discovery and development that will address the urgent needs of people living with or at risk for a neurodegenerative disease.

Each year, AFTD convenes industry leaders and researchers in pre-competitive forums to facilitate robust conversations about advancing tools and technologies that will further assist in addressing multiple neurodegenerative diseases.

Population(s) Served
Adults

AFTD seeks to promote a greater understanding among the general public and key stakeholders within communities about the unique nature and challenges brought about by an FTD diagnosis, and the crucial need for support and access to resources for those who are coping with it. We work with a growing number of volunteers who are engaged in raising awareness of FTD and our mission in a number of different ways, including Meet & Greets, table settings, interviews with media outlets, and meeting with community healthcare professionals. Many of our volunteers are active in hosting grassroots campaigns throughout the year to spread awareness in their communities and raise funds to support AFTD’s work.

Population(s) Served

Each year, AFTD’s Education Conference brings together persons diagnosed, care partners, staff, volunteers, health professionals, and researchers to discuss the issues related to FTD, including the latest guidance on care strategies, current options for support, and information on current research and emerging issues in the field. The 2022 Education Conference, held in person and broadcast online, drew more than 780 from 28 different countries.

AFTD is developing a robust library of educational webinars and resources designed to assist people navigated the FTD journey. In 2020, AFTD published “Walking with Grief: Loss and the FTD Journey,” drawing from discussions with dozens of people with directly impacted by FTD, to help individuals navigate the grief journey brought about by this disease.

Three times a year, we publish a Partners in FTD Care newsletter for healthcare professionals and care partners to identify strategies for overcoming common challenges in FTD.

Population(s) Served
Adults
Adults

AFTD advocates with public officials to promote programs that provide appropriate, affordable and high-quality, long-term health care and social services for people impacted by FTD. We engage with policymakers to raise awareness and ensure funding for FTD research is included in the nation’s response to the growing dementia crisis. As a sponsor of and contributor to the National Institute on Aging’s Care, Services, and Support for Persons with Dementia and Their Caregivers summit, AFTD continues to ensure the distinct needs of the FTD community are incorporated into the national conversation regarding dementia care and funding for research and improved support resources. Additionally, AFTD staff serve as working advisory group members to ensure FTD remains an area of focus.

Population(s) Served

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2006

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Comstock Quality of Life, Respite and Travel Grants awarded to people and families living with FTD.

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

AFTD's Comstock Grants provide direct financial support to people and families living with FTD.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Related Program

Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Every year, AFTD convenes people and families affected by FTD and health professionals, to learn about current ongoing research and care strategies, and gain opportunites to connect.

Percentage of annual expenses for FTD research

This metric is no longer tracked.
Totals By Year
Related Program

FTD Research and Drug Discovery

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of HelpLine contacts

This metric is no longer tracked.
Totals By Year
Related Program

Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Since 2002, AFTD has provided information and guidance tailored to people who are facing FTD.

Number of AFTD Grassroots Events

This metric is no longer tracked.
Totals By Year
Related Program

Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

AFTD's Grassroots Events offer volunteers the opportunity to raise awareness of FTD and funds in support of our mission in their communities.

Number of website visitors

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AFTD's website is often a first point of contact for many people who have recently learned about FTD. We offer in-depth information, resources and guidance to help people navigate their FTD journey.

AFTD Facebook Group Members

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

As the leading national organization focused exclusively on FTD disorders, AFTD's mission is to improve the quality of life of people affected by FTD and drive research to a cure. Our work is dedicated to providing information, education, support and advocacy 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 public and private programs that provide appropriate, affordable and high-quality, long-term health care and social services; and promote better diagnostic processes, therapies and cures for FTD. AFTD envisions a world with compassionate care, effective support, and a future free of FTD.

AFTD works to develop unique resources that offer information and guidance for people diagnosed with FTD and their families. Through our HelpLine, AFTD staff offers tailored advice to over 2,500 people a year, and there are 105 AFTD-affiliated support group facilitators leading 83 groups across the country, providing vital access to a network of peers living with FTD. In FY20, AFTD awarded over 252 Comstock grants to persons diagnosed and their caregivers to assist with travel, respite and quality of life.

Our staff collaborates with a growing number of partners each year to educate healthcare professionals about this disease to advance accurate diagnoses and effective disease management and treatments. Working with FTD experts, AFTD develops and presents a series of educational webinars to address the FTD spectrum, present care strategies and share emerging research with our audience that includes persons diagnosed, caregivers and healthcare professionals.

Throughout the year, we publish a Partners in FTD Care newsletter for healthcare professionals and caregivers, and work to develop resources tailored for those affected by FTD in different ways.

AFTD hosts an annual Education Conference bringing together persons diagnosed, caregivers, staff, volunteers, healthcare professionals and industry leaders to comprehensively discuss FTD-related topics. In 2020, in response to COVID-19 we held our Conference online; more than 630 people joined 5 webinars over the course of May 2020.

AFTD invests in research to drive discovery and development of accurate diagnoses, clinical care and treatments through pilot grants, postdoctoral fellowships and biomarker discovery grants. To expand and strengthen FTD research, AFTD has built strategic partnerships with the Alzheimer’s Drug Discovery Foundation (ADDF) and Target ALS to foster collaborations that bring together academics, industry professionals, and other nonprofit organizations to develop effective tools and therapies for all types of dementias.

Recently, AFTD became a partner in the Foundation for the National Institutes of Health Biomarkers Consortium and hosted a TDP-43 biomarker workshop to identify, develop and validate biomarkers to enable drug development, and improve clinical care and diagnosis for FTD.

Working with volunteers in our community, AFTD is working hard to emphasize the importance of young-onset dementia and FTD as policymakers in Washington, DC and around the country work to address dementia, with a focus on ensuring that FTD is considered in decision-making about research funding and social services.

Based in King of Prussia, Pennsylvania, AFTD’s 23.5 FTE employees work closely with an extensive network of more than 350 volunteers to raise support for and awareness of people living with FTD throughout the United States. Volunteers regularly perform community outreach, representing the organization at healthcare conferences and informal gatherings, as well as conduct media interviews and visit care facilities to raise awareness among clinicians and medical professionals about caring for individuals with FTD. Every year, volunteers hold a variety of grassroots campaign fundraisers in their own communities and in support of AFTD’s mission.

AFTD works with an all-volunteer Medical Advisory Council of 24 experts from among the foremost leaders in FTD research and clinical care. We collaborate closely with and provide crucial technical support to the members of the ALLFTD clinical network, which is an integrated group of academic medical centers dedicated to FTD clinical research. As a co-founder, AFTD partners closely with the FTD Disorders Registry, as well as leading research and patient advocacy organizations focused on Alzheimer’s Disease, ALS, Parkinson’s and other neurodegenerative conditions.

Research partnerships are crucial to advancing diagnoses and treatments across the dementia spectrum. AFTD has formed strategic partnerships with leading organizations in neurological research such as ADDF and Target ALS. In 2016, AFTD and ADDF launched a $10 million initiative designed to bring both novel and repurposed treatments into clinical testing for FTD and related disorders, as well as to support innovative clinical trial designs.

AFTD and ADDF’s investment will ensure up to $5 million in FTD research through the Diagnostics Accelerator program, which is designed to fast track the development of diagnostic tests and novel biomarkers for early, effective detection of Alzheimer's disease and related dementias. The first investment of $1.2 million is for the Bluefield Project to Cure FTD to validate an exploratory blood test to determine the optimal time to begin potential treatment for individuals at-risk for FTD caused by a genetic mutation.

AFTD has partnered with Target ALS on a $5 million initiative, funding six industry and academic collaborations to pursue and develop shared therapeutic strategies that will address FTD and ALS. These studies will inform, and potentially result in, both viable treatments and the biomarkers critically needed to enable accurate diagnosis and measure disease progression.

AFTD was founded in 2002 by Helen-Ann Comstock, whose late husband had been diagnosed with FTD. Using her experiences as a caregiver, she worked with a team of dedicated FTD care partners and medical professionals to establish an organization focused on advancing research for FTD, providing information and education, support, and raising awareness of this rare disease. AFTD has grown from an all-volunteer base to a thriving nonprofit employing 23.5 FTE staff that works in collaboration with our committed and engaged volunteer base.

Since 2005, AFTD has conferred over 40 grants, awards and fellowships to advance FTD research. Through partnerships with the Alzheimer’s Drug Discovery Foundation (ADDF) and Target ALS, AFTD has invested millions in donor resources to expand into crucial FTD biomarker, clinical trial design and drug development research.

AFTD has operated our HelpLine since our foundation in 2002 and most recently responded to 2,546 cases offering tailored information and support. Website traffic has increased to over 425,000 visitors, who come seeking our many resources and reliable guidance about FTD.

The AFTD volunteers are essential to raising awareness and advocating for resources and support vital to families living with FTD. Every year, hundreds of grassroots events and campaigns are hosted by persons diagnosed, caregivers and family members sharing AFTD’s mission with those in their own communities. Last year there were 575 independent events.

In collaboration with the Bluefield Project, AFTD launched the FTD Disorder Registry in 2017 to encourage persons diagnosed, family members, and care givers to share their unique perspective to help others learn more about FTD. Today, 3,697 people have joined the registry.

The unique and devastating nature of FTD brings with it complex burdens for families to confront. To raise more awareness of one of the many challenges, AFTD funded and co-wrote a 2017 economic burden study featured in the journal Neurology.

The AFTD Educational Webinar Series, a library of in-depth presentations covering a diverse array of subjects pertaining to the FTD disease spectrum, continues to grow. For FY21, we will present webinars on topics such as symptom presentation and management, caregiver well-being, current research, and many more issues relevant to living with FTD.

Using media platforms like CBS’s 60 Minutes, the New York Times and local-affiliate news stations, AFTD works to continually raise awareness of FTD. In 2018, Discovery Communications worked with AFTD to develop a series of PSAs about FTD that has reached more than 100 million viewers. AFTD helps coordinate World FTD Awareness Week, which welcomed 287 participants from 230 cities in 21 countries to share their experience with FTD.

As AFTD sustains and expands its work, the work of our Board, staff and volunteers will drive forward our vision of a world with compassionate care, effective support, and a future free of FTD.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    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, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    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.

  • With whom is the organization sharing feedback?

    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?

    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.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

The Association for Frontotemporal Degeneration
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The Association for Frontotemporal Degeneration

Board of directors
as of 08/08/2022
SOURCE: Self-reported by organization
Board chair

Mr. David Pfeifer

No affiliation

Term: 2019 - 2022

Gail Andersen

Kathy Mele

Daniel Hedaya

Kacy Kunesh

Brian Rose

Michael H.B. Stowell

Kimberly Pang Torres

Sandra Grow

Kristin Holloway

Jary Larsen

David Pfeifer

Christian Barrow

Halima Amjad

Helen-Ann Comstock

Joseph Marquez

Donald Newhouse

Kristin Schneeman

Rita Choula

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 3/19/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 07/26/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • 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 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.
Policies and processes
  • 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.