It has been a while since we last introduced our team at FTD_Talk, and there have been quite a few changes since then! Not only has our team changed, but also grown, with many more great Research Assistants and PhD students working hard to contribute to our familial frontotemporal dementia research.
Group leader
Jonathan
I am a Professor of Neurology and have been working in FTD research for nearly 20 years. The goal of our team is to work towards a cure for FTD. We do that by working with families where there is a genetic form of FTD who we look after in our clinic and who help us in our large international study called GENFI. We develop new biomarkers that might be used in clinical trials to show a drug has worked or to say when a drug should be given. Within the team we have people working on cognitive tests, digital measures, brain imaging and fluid biomarkers. I am a father of 8-year old triplets and so spend much of my spare time building Lego and reading Harry Potter!
Postdoctoral Researchers
Arabella 
Lucy 
Hi, I am Lucy. I am a postdoctoral research fellow and I coordinate the Frontotemporal Dementia (FTD) Prevention Initiative (FPI) which aims to help promote clinical trials for genetic forms of FTD. I work with researchers from around the world to help support them in their research and involve them in clinical trials. My favourite thing about working in FTD is the sense of community you get from the field, ranging from the collaborations between the researchers, to the links we have with pharmaceutical companies and patient advocacy groups, to how involved those living with FTD want to be. It is great to be part of such a cohesive movement to try and find a cure for FTD. Outside of work, I love to explore the countryside with my family and dogs, and like to go sea swimming when it’s not too cold!
Rhian
Hi, I am Rhian, a postdoctoral researcher in the team and I coordinate the Early detection of Frontotemporal dementia (EDoF) study. The aim of EDoF is to develop a set of digital tools for the assessment of cognition, sleep, speech, and motor function in FTD. Digital measures can be usedto monitor and track symptoms frequently from the comfort of patient’s homes. It is an exciting time for FTD research with disease modifying clinical trials taking place, and digital assessments will likely play an important role. My favourite thing about working in the field is being part of a wonderful community ofresearchers, patients, family members and now pharmaceutical companies, all actively contributing to clinical trials and the development of novel therapeutics. Outside of work, I like to cycle, try new restaurants and coffee spots, and enjoy all that London has to offer.
PhD Students
Amelia
I joined the team in June 2024 as the study coordinator for the GENFI study and have recently begun my PhD within the group. My research focuses on expanding the digital branch of our work, with the goal of making data collection more digital, frequent, and accessible remotely. As part of this effort, we collect data through wearable devices, speech samples, and our cognitive assessment app Ignite. By identifying the most accurate and user-friendly remote measures for detecting early changes in FTD, we aim to improve early symptom detection. This is important for clinical trial recruitment and to assess whether a trial has been successful.
My favourite part of my role has always been working with participants and spending the day with them during their research visits. It’s a great experience to be part of a global study and to share what we do during visits and events with everyone involved. I also enjoy sharing updates through these blogs and our social media account. Outside of work, I love spending time outdoors, especially when it involves running or hiking. I also enjoy exploring new restaurants in London with friends, as well as spending quiet time reading or painting.
Erin
As a doctor training in Neurology, I first joined the GENFI team in 2021 during my academic clinical fellowship, and I have returned now to undertake a PhD. My research focuses on using machine learning and novel neuroimaging techniques to better predict the time of symptom onset. My aim is to create tools that can be used to run more efficient clinical trials.
I have taken a meandering path to get here from my hometown in sunny Los Angeles, dabbling in Latin and Opera before moving to the UK to do research and then studying medicine. On sunny days, you can usually find me gardening, swimming, or bird-watching. In rainy weather, I hide inside with a book or a sewing project.
Hi, I’m Kerala, I’m a neurology registrar and clinical research fellow, completing a PhD within Prof Rohrer’s lab. My PhD aims to develop new ‘digital biomarkers’ for use in FTD research and clinical trials. This means using technology such as ‘wearables’ (e.g. Fitbit smart watches), and computerised testing, to detect early changes of frontotemporal dementia and motor neurone disease. The aim is to use technology to monitor people remotely within clinical trials. There are many reasons I enjoy working within FTD research. One of these is getting the opportunity to meet participants attending a research visit who are at risk of developing genetic forms of FTD and/or MND. They provide huge motivation to contribute to this field of research that aims to develop treatments, and hopefully cures, for the disease. Outside of work I try to keep fit with cycling and yoga, and I enjoy going to the theatre. I also love a bit of DIY and gardening and own far too many power tools!
Phoebe
Hello, I’m Phoebe – a second-year PhD student in Professor Jonathan
Rohrer’s GENFI team. My research focuses on the cognitive, behavioural, and neuropsychiatric features of people with genetic FTD-causing mutations, from childhood through adulthood. I’m particularly interested in how these features evolve over time in individuals at risk of genetic FTD. A highlight of my project so far has been visiting London schools to run neuroscience workshops and inspire future STEM students.
In addition to my PhD, I’m the GENFI site qualification and liaison coordinator, supporting the onboarding of new European and Canadian sites and ensuring investigators are trained and study-ready. I love this aspect of my role as it keeps me connected to GENFI researchers worldwide. I also co-run the GENFI Participant Engagement Board (PEB), helping to organise annual feedback sessions and webinars. It’s an incredibly rewarding opportunity to collaborate directly with individuals impacted by FTD, and to incorporate their input into the study.
Before starting my PhD, I worked as a research assistant in the team for two years, supporting study visits, sharing updates on the FTDtalk website, and serving as a clinical trial back-up rater at UCLH. Outside of work, I enjoy being active, cooking, travelling, and going to festivals!
Sophie
Research Assistants
Eva C.
I have recently joined the team as a Research Assistant for the global GENFI study. In my role, I assist with database management by liaising with study sites for data upkeep, preparing data for analysis, and conducting quality control of MRI scans. I also support participant visits by carrying out neuropsychological tests. I look forward to contributing to this important research and helping to identify cognitive, imaging and fluid biomarkers of familial FTD that could inform future clinical trials. Outside of work I enjoy going to music events, cooking, and spending time outdoors – when it’s not too cold!
Eva L.
I am Eva, a research assistant funded by the David Blechner Grant and joined the team in September 2023 to lead data collection for the Early Detection of FTD (EDoF) study, focusing on digital and muscle-based biomarkers. Alongside Dr. Kerala Adams-Carr, I developed and implemented a muscle protocol for GENFI’s C9orf72 participants and completed the EDoF-N study, collecting data from around 120 healthy controls. I also coordinated the Molecular Imaging of Neuroinflammation (MINI) PET study and collaborated with Perceptive on their MAPT PET tracer study.As part of a collaboration with UCSF’s ALLFTD team, I compared mobile app data between UCL’s Ignite App and UCSF’s ALLFTD app. I also began collecting blood samples and cognitive data for the University of Cambridge’s ON-FIRE biomarker study recently. I now lead the EDoF study in symptomatic ALS/FTD participants and support the development of GENFI-ALS.
Eve
I am a research assistant and I joined the GENFI team in December 2022. My role in the team is Data Coordinator, so my main job is to ensure data collection goes smoothly. I liaise with sites to resolve any errors in the data or missing data, as well as checking the quality of MRI scans and arranging sample shipments, so that the data can then be used for research projects. Recently, I have been working on a project assessing the comparability of rapid and classical anatomical MRI scans to distinguish patients with FTD from controls. My favourite thing about FTD research is how passionate everyone is about their work. It’s exciting to be in a field where everyone cares so much about what they do, especially at conferences when you get to see what people are working on and it feels like real progress is being made. Outside of work I enjoy drawing and painting, and love to go surfing when I get the chance!
Luna
Hi, I am Luna and I recently rejoined the team as a research assistant. I was previously part of the group in 2024 while completing my undergraduate research dissertation on the iPad-based app Ignite, where I contributed to the development of two novel tasks. In my current role, I am involved in running the GENFI visits, which is one of my favourite parts of the job, as I get to spend the day with participants. I also contribute to the Early Detection of FTD (EDoF) study, collecting data for our digital biomarker work and conducting muscle recordings using muscle ultrasound and surface EMG. I am also involved in our exciting new work expanding GENFI to ALS, helping recruit symptomatic ALS and FTD patients to test these novel technologies. Outside of work, I enjoy reading, dancing, yoga, as well as spending time outdoors on long walks through the city or out on runs with friends.
Sophie 
I am a Research Assistant on the GENFI study, where I work as one of the project’s Site Qualification and Liaison Coordinators. My role involves supporting the onboarding and training of new sites across Europe and Canada, as well as acting as one of the UCL site liaisons for the Global FTD Prevention Initiative (FPI). I help with the day-to-day running of participant visits, including coordinating the digital and remote bio marker arm of the study. Alongside this, I support participant recruitment into clinical trials at UCLH and act as a back-up rater for some of these studies.
I really enjoy the varied and interdisciplinary nature of my role – particularly the opportunity to be involved in both the clinical and research sides of the work. One of the highlights for me is supporting our Participant Engagement Board (PEB) and taking part in outreach and support events. These moments really bring home the impact our research has on patients and their families. Outside of work, I enjoy staying active by going to the gym and running with friends, as well as spending time reading and cooking.
Toya
I joined the team as a Research Assistant in September 2025, shortly after finishing my undergraduate degree at the University of Bristol. I now coordinate the GENFI study at the London site at UCL where I help organise research visits and stay in touch with participants and families throughout their involvement. I have also been analysing data from our GENFI-Cog, a gene-type specific version of our neuropsychology testing battery, which I am excited to continue to work on.What I enjoy most about this role is getting to speak with and get to know our participants. Meeting the people and families who are directly affected by familial FTD brings a huge sense of meaning to the work, and it’s a privilege to contribute to something that we hope will ultimately help many in the future.
We are excited to continue to share our research projects and findings with you! If you are curious to learn more about our work, click here.
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