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The Association for Frontotemporal Degeneration: providing reliable information, essential resources and vital support for the FTD community

Genetic counsellor Susan Dickinson from the Association for Frontotemporal Degeneration (AFTD) talks to us about her leadership role to drive growth, and the work of the AFTD. The AFTD has expanded programmes to advocate for the needs of FTD families, and has invested in several multi-million-dollar research initiatives focusing on diagnosis and treatment for FTD. 
How did you become involved with AFTD and advocating for the FTD community? 

I joined AFTD in 2008 as its executive director; today I am its chief executive officer. I have spent several decades of my career cultivating effective communication across lay, scientific and medical communities. I am a genetic counsellor with clinical experience, and have also worked as a consultant to patient-advocacy organisations. I also serve on the Advisory Council for the National Institute of Neurological Disorders and Stroke.

Susan Dickinson
How did you become involved with AFTD and advocating for the FTD community? 

I joined AFTD in 2008 as its executive director; today I am its chief executive officer. I have spent several decades of my career cultivating effective communication across lay, scientific and medical communities. I am a genetic counsellor with clinical experience, and have also worked as a consultant to patient-advocacy organisations. I also serve on the Advisory Council for the National Institute of Neurological Disorders and Stroke.

Why was AFTD founded, and how does it support the FTD community?

AFTD was founded in 2002 by Helen-Ann Comstock, a former FTD caregiver for her husband, Craig. For several years after its inception, AFTD remained an all-volunteer organisation; today it employs over 30 full-time professional staff. AFTD works on behalf of our community—people living with an FTD diagnosis, their families, healthcare professionals, and medical researchers—by focusing every day on advancing our five key mission areas:

  1. promoting and funding FTD research 
  2. stimulating public awareness and understanding
  3. providing information and support to people affected by FTD
  4. educating healthcare professionals about this disease
  5. advocating for appropriate and affordable FTD services
How important is advocacy and accessible education for the FTD community? 

According to current best estimates, about 60,000 people are currently living with an FTD diagnosis in the US, but that number clearly does not accurately reflect the number of people who have this disease. FTD is often misdiagnosed as Alzheimer’s disease, depression or other neurological or mental-health conditions, or simply dismissed as eccentric behaviour. AFTD advocates on behalf of those affected by FTD, working to educate policymakers that not all dementia is Alzheimer’s disease. We perform outreach and produce materials to educate healthcare professionals about FTD. 

Early, accurate diagnosis is critical to ensuring the best possible quality of life for people living with FTD and for their care partners, and to advancing research on this condition.

What are the unmet needs for the FTD community?

Lack of awareness of this disease, particularly among healthcare professionals, contributes significantly to the difficulty many people face in getting an accurate diagnosis—it takes an average of 3.6 years between symptom onset and a correct diagnosis of FTD. But the biggest unmet need is clear: approved, effective treatments for FTD. There are currently no disease-modifying treatments available for FTD, although medications are often prescribed to treat certain symptoms (for example, for depression). 

Until treatments are approved, AFTD continues to work every day to improve the quality of life for those affected by FTD.

How can healthcare professionals best support individuals with FTD?

The more that healthcare professionals understand FTD—most notably, how it differs from Alzheimer’s and other forms of dementia—the more they will be able to provide targeted, meaningful care. Unlike Alzheimer’s, FTD does not primarily affect memory; instead it targets personality, behaviour, language and movement. Additionally, FTD is more common among younger people than Alzheimer’s; it is, in fact, the most common dementia for people under the age of 60. This, combined with the personality, behavioural and language symptoms of FTD and the delay in accurate diagnosis, means that this form of dementia can have a very distinct, painful impact on young families.

How does AFTD support research?

AFTD regularly awards grants to scientists working on innovative FTD research, whether they are looking into the causes of FTD to grow our understanding of this disease, or testing potential symptom-modifying treatments. Some of AFTD’s grant opportunities include:

  • Pilot Grants, which provide seed funding for innovative projects by early-career investigators
  • Holloway Postdoctoral Fellowships, which support the next generation of FTD researchers
  • numerous grants awarded in collaboration with the Alzheimer’s Drug Discovery Foundation and through our partnership with Target ALS 

AFTD also co-founded the FTD Disorders Registry, which contributes to researchers’ understanding of the lived experience of FTD while also connecting affected people to clinical trials and other research opportunities.


What research are you currently contributing to?

Some of the current research projects that are being undertaken by AFTD-funded researchers include: 

  • an evaluation of Rotigotine, a Parkinson’s drug, as an FTD treatment
  • the use of positron emission tomography (PET) tracers to help determine how brain inflammation correlates with FTD onset and progression
  • the adaptation of a videoconferencing support tool, currently optimised for Alzheimer’s, to help families identify and implement FTD care strategies based on cognitive behavioural techniques
 What are the main priorities for the future of FTD research? 

The development of disease-modifying treatments remains the top priority in FTD research.

The identification of FTD biomarkers would significantly help in attaining early, accurate diagnosis. Biomarkers are ways of objectively measuring the presence of specific disease processes in the body. For example, high blood pressure can be a biomarker indicating heart disease. Finding a biomarker for FTD could help save years of frustration and heartache for families seeking a diagnosis.


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Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly and Company, is dedicated to developing gene therapy-based treatments with the potential to slow or stop the progression of neurodegenerative conditions such as frontotemporal dementia, Gaucher disease, and genetic forms of Parkinson’s disease. To learn more about Prevail, visit their website.

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