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 guided by our 2022-2025 Strategic Plan, AFTD seeks 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 Alzheimers Drug Discovery Foundation (ADDF), Target ALS, and the ALS Association. These strategic collaborations bring together academics, industry professionals, and other nonprofit organizations to develop effective tools and therapies for all types of dementias.

While AFTD continues to connect with more people facing a diagnosis, particularly those in underrepresented communities, we will expand our current library of essential resources that offer information and guidance, and collaborate with a taskforce of healthcare professionals, care partners, and persons diagnosed to maintain an updated catalogue of best practices in FTD care and support. AFTD will augment our direct services and support options to meet the needs of the people we serve.

To ensure FTD remains a priority in the conversation about Alzheimers disease and dementia care, AFTD staff, Board members, and volunteers engage with policymakers at the national, state, and local level. In September 2023, AFTD launched the Advocacy Action Center, a platform for people impacted by FTD to access tools and information on being an advocate and directly communicate with their state legislators on issues such as ensuring equitable access to improved dementia care and expanding funding for medical research and non-pharmacological interventions for FTD.

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 creates educational webinars to address the spectrum of disorders, present care strategies, and share emerging research with our audience that includes persons diagnosed, care partners, and healthcare professionals. Our annual Education Conference, held as a hybrid event, will bring together people living with an FTD diagnosis, care partners, staff, volunteers, healthcare professionals, and industry leaders to comprehensively discuss FTD-related topics.

Based in King of Prussia, Pennsylvania, AFTDs staff of nearly 50 professionals works closely with an extensive network of volunteers to raise support for and awareness of people living with FTD throughout the United States. Volunteers regularly engage with key stakeholders and healthcare professionals in their communities by representing AFTD at healthcare conferences and informal gatherings, participating in media interviews, and conducting outreach to raise awareness and funds in support of AFTDs mission. Every year, hundreds of volunteers hold a variety of fundraising events in their own communities and in support of AFTDs mission.

AFTD works with an all-volunteer Medical Advisory Council comprised of 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 Alzheimers Disease, ALS, Parkinsons, 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.

AFTD fosters impactful research partnerships to advance timely diagnosis and develop effective treatments across the dementia spectrum. In 2016, AFTD and ADDF launched the Treat FTD Initiative, a $10 million program designed to study the effectiveness of both novel and FDA-approved therapies with the potential to treat FTD and support innovative clinical trial designs. With encouraging progress being made in this area of research, AFTD and ADDF renewed the partnership through 2035.

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 enables 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 caregivers 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 nonprofit employing more than 40 professionals working in collaboration with a committed and engaged volunteer network.

Since 2002, AFTDs HelpLine has been a vital resource to people affected by FTD. Serving nearly 3,400 people a year, the HelpLine staff provide information and guidance tailored to the needs of the people we serve. In fiscal year 2023, more than 2.2 million people visited our website to learn about FTD, connect with peers, and discover ways to become involved with our mission.

Currently, AFTD is supporting a global community of FTD-focused investigators by funding or co-funding more than 30 studies focused on basic science, clinical and translational research, therapeutic development, and biomarker discovery.

Our volunteers are essential to raising awareness and advocating for all people impacted by FTD. Every year, hundreds of grassroots fundraising events are hosted by persons diagnosed, caregivers and care partners, and family members who are dedicated to advancing public understanding of FTD within their local communities. In fiscal year 2023, AFTD volunteers hosted 540 events to raise awareness and funds to support AFTDs mission.

The FTD Disorder Registry, launched in 2017, enables persons diagnosed, family members, and care partners and caregivers to share their unique perspective and access information about current clinical trials. Additionally, the Registry is a resource for researchers seeking to learn more about the lived FTD experience and connect with qualified participants. As of January 2024, more than 6,500 people have joined the Registry.

AFTD continues to expand its library of resources geared toward educating healthcare professionals, including our series of in-depth webinars covering an array of subjects pertaining to the FTD disease spectrum. In fiscal year 2023, we presented webinars on topics such as genetic testing and the current landscape of clinical trials, brain donation, and strategies for differentiating and treating behavioral variant FTD.