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.

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
Register now

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?

FTD Drug Discovery

AFTD raises $200,000 each year for research grants to develop the first therapeutics for FTD. Our funds are matched 2:1 by our partners in this program, the Alzheimer's Drug Discovery Foundation--so every dollar we raise results in $3 for our drug discovery researchers. The program is also dedicated to development of biomarkers for FTD.

Population(s) Served
Adults

In 2009 AFTD started a Caregiver Respite Grant program, under which full-time, unpaid caregivers of FTD patients can apply for up to $500 to help arrange for patient care so they can get some respite time for themselves.

Population(s) Served
Adults

AFTD hosts a toll-free HelpLine and email address for patients and caregivers. We facilitate a growing network of caregivers support groups; we sponsor three telephone support groups for caregivers located in remote areas, including one for spouses of FTD patients who are also caring for school-age children. We also have a caregiver matching program, where two caregivers in the same geographic area can meet to provide each other support. We sponsor a growing number of regional caregiver conferences; we host and keep current an informative website to connect caregivers with the most up-to-date information and resources. We publish a newsletter 3 times a year and host a Facebook page where our patients and families can post comments.

Population(s) Served
Adults

Promoting and funding research to understand the biology of FTD and develop the first disease-modifying therapies for our patients is one of the greatest passions at AFTD. We employ a range of mechanisms to drive forward this aspect of our mission: Funding pilot research: in 2010 we are funding a $60,000 pilot study and the second year of the first AFTD Postdoctoral Fellowship. Funding collaborations: AFTD regularly sponsors workshops to bring together scientists and clinicians; in 2010 we co-hosted a meeting with NIH to bring together FTD researchers to design a national patient registry. AFTD has also partnered with Indiana University to conduct research around the barriers to families' participating in research.

Population(s) Served
Adults

AFTD is working to promote awareness of FTD among healthcare professionals and the public at large. We also advocate for increased research funding and appropriate services for our patients. AFTD has created and begun to populate a volunteer regional network across the US and Canada. Each of 7 US Regions and 7 Canadian Regions is led by a volunteer regional representative who is working to connect caregivers within their region with each other and with available resources.

Population(s) Served
Adults

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, Information and Education for Caregivers

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

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, Information and Education for Caregivers

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 and Advocacy

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.

Financials

The Association for Frontotemporal Degeneration
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

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.

lock

Connect with nonprofit leaders

Subscribe

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 3/26/2021
SOURCE: Self-reported by organization
Board chair

Mr. David Pfeifer

No affiliation

Term: 2019 - 2022

Helen-Ann Comstock

No Affiliation

Gail Andersen

Kathy Mele

Stephen Fenoglio

Beth Walter

Rick Childs

Matt Hatfield

Daniel Hedaya

Kacy Kunesh

Brian Rose

Michael H.B. Stowell

Kimberly Pang Torres

Sandra Grow

Kristin Holloway

Jary Larsen

David Pfeifer

Christian Barrow

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 03/19/2021

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