The Association for Frontotemporal Degeneration

AFTD envisions a world with compassionate care, effective support, and a future free of FTD. Our mission is to improve the quality of life of people affected by FTD and drive research to a cure. Our goals, established by the 2022-2025 Strategic Plan, are:

To advance diagnosis, therapies, and a cure for all affected by FTD. For many, receiving an accurate diagnosis is a frustrating, multi-year process of false leads and false hope. AFTD promotes and supports research to understand the underlying causes of FTD, to discover biomarkers that will aid in diagnosing and monitoring disease progression, and to develop the first therapies that will address the unmet needs of this community.

To ensure quality and responsive FTD care and support are available to anyone in need. Guided by input from clinicians, researchers, dementia care specialists, and persons diagnosed, AFTD produces a wide variety of resources, including newsletters, guides, and webinars that educate and empower people at every stage of an FTD diagnosis. To bring forward a higher quality of care, we seek to expand our resources, creating and sharing standard and effective practices in FTD care with people impacted and professionals.

To advance awareness of FTD and promote AFTD as a vital resource for all who are impacted. In collaboration with a growing national network of volunteers, AFTD seeks to raise awareness among the general public about the nature and occurrence of FTD and the unique challenges faced by persons diagnosed. We are fostering partnerships and connections across the country to bring targeted support to local communities.

To strengthen and diversify the organization for meaningful and efficient impact. AFTD aims to build a culture where staff can thrive and be empowered to dynamically engage with the people we serve. We will provide staff with tools to proactively respond to the needs of our community today, and build processes that will ensure sustainability to meet those of the future.

As we work towards the goals established in our 2022-2025 Strategic Plan, AFTD will continue our support of research studies to accelerate FTD biomarker discovery and therapeutic development through our Pilot Grants initiative, Holloway Postdoctoral Fellowship awards, and grants made with partnering organizations, such as the Alzheimer’s Drug Discovery Foundation (ADDF) and Target ALS. These strategic collaborations bring together academics, industry professionals, and other nonprofit organizations to develop effective tools and therapies for all types of dementias.

As we expand our reach to more communities, we will build upon our current library of unique resources that offer information and guidance for people diagnosed with FTD and their families, and establish a taskforce of healthcare professionals, care partners, and persons with FTD to create and share a catalogue of promising practices in FTD care and support. AFTD’s direct services will continue to grow, supporting an increased number of families with tailored advice for the FTD journey, expanding our network of AFTD-affiliated support group facilitators to providing vital access to a network of peers living with FTD, and offer direct support to persons diagnosed and their caregivers through our Comstock Grant to assist with quality of life, respite care services, and travel to our Education Conference.

Our staff will strengthen collaborations with a growing number of partners to educate healthcare professionals about FTD to advance accurate diagnosis and effective care management strategies. Working with FTD experts, AFTD will further develop and present educational webinars to address the spectrum of disorders, present care strategies, and share emerging research with our audience that includes persons diagnosed, caregivers, and healthcare professionals. We will hold our annual Education Conference in person and virtually in May 2023, bringing together people living with an FTD diagnosis, caregivers, staff, volunteers, healthcare professionals, and industry leaders to comprehensively discuss FTD-related topics

In collaboration with AFTD volunteers, we will raise awareness of FTD within the growing dementia crisis, informing policymakers at the state and national level to bring attention to the urgent needs of this community.

Based in King of Prussia, Pennsylvania, AFTD’s 44.5 FTE employees work closely with an extensive network of more than 270 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, conduct media interviews, and engage with clinicians and medical professionals to raise awareness about caring for individuals with FTD. Every year, hundreds of volunteers hold a variety of fundraising events in their own communities and in support of AFTD’s mission.

AFTD works with an all-volunteer Medical Advisory Council of 23 experts from among the foremost leaders in FTD research and clinical care. We collaborate closely with and provide crucial technical support to members of the ALLFTD clinical network, which is an integrated group of academic medical centers dedicated to FTD clinical research, and partner closely with leading patient advocacy organizations focused on Alzheimer’s Disease, ALS, Parkinson’s, and other neurodegenerative conditions to raise awareness and promote research to improve the quality of life for all who are affected by FTD and related disorders.

In collaboration with our partners at the Bluefield Project to Cure FTD, AFTD oversees the FTD Disorders Registry, providing a safe and secure environment for persons directly impacted to share their unique perspective of living with the disease. Information shared with the registry is vital to shaping research and clinical trials, and helps people learn about ongoing or upcoming trials that they may qualify to join.

Research partnerships are crucial to advancing diagnosis and treatments across the dementia spectrum. In 2016, AFTD and ADDF launched the Treat FTD Initiative, a $10 million program 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. In 2020, AFTD and Target ALS partnered on a multi-year initiative to support six research consortia, comprised of academic and industry researchers, seeking to develop tools and technologies to bring forward therapies to address FTD and ALS caused by the C9orf72 mutation.

We are fostering strategic partnerships through the FTD Research Roundtable, a collaboration between AFTD and biopharmaceutical companies engaged in FTD-focused research and drug development. This partnership will enable all parties to focus on a diverse set of topics including disease progression modeling, statistical design for clinical trials, gene therapy, and biomarker development, and use these avenues to deliver treatment and accelerate research to find a cure for FTD.

AFTD was founded in 2002 by Helen-Ann Comstock, whose late husband had 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, education, and support, while raising awareness of this disease. AFTD has grown from an all-volunteer organization to a thriving national nonprofit employing 44.5 FTE staff that works in collaboration with a committed and engaged national volunteer network.

Since 2015, AFTD has conferred or co-sponsored over 71 grant awards to advance FTD research, investing more than $24 million to accelerate crucial FTD biomarker discovery and drug development.

Since 2002, AFTD’s HelpLine has been a vital resource to people affected by FTD. Serving more than 2,300 people a year, the HelpLine staff provide information and guidance tailored to the needs of the people we serve. In fiscal year 2022, 501,854 people visited our website to learn about FTD, connect with peers, and discover ways to become involved with our mission.

Our volunteers are essential to raising awareness and advocating for families living with FTD. Every year, hundreds of fundraising events are hosted by persons diagnosed, caregivers, and family members who are dedicated to generating greater understanding of this disease in their communities. In fiscal year 2022, 348 fundraising volunteers held events to raise awareness and funds to support AFTD’s mission – an organizational record.

In collaboration with the Bluefield Project, AFTD launched the FTD Disorder Registry in 2017 to encourage persons diagnosed, family members, and care partners and caregivers to share their unique perspective, helping others learn more about FTD. As of February 2023, there are 5,770 people who have joined the registry.

AFTD continues to expand its Educational Webinars library, a series of in-depth presentations covering an array of subjects pertaining to the FTD disease spectrum. In fiscal year 2022, we presented webinars on topics such as neuropalliative care, effective person-centered approaches to support persons diagnosed and family caregivers, current clinical trials, and common features of the three main types of FTD - primary progressive aphasia, corticobasal syndrome, and progressive supranuclear palsy.

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