Meet the ON-FIRE Teams!
On the last day of the World FTD Awareness Week, we want to put the spotlight on the teams behind ON-FIRE. Here we share quotes and pictures that some of the teams wanted to share with the community for this occasion. A big thank you to everyone for all your dedication and hard work!
Royal University Hospital, Bath
The RUH Bath Team:
Ruth Blackman (PI)
Vicky Page (sub-PI)
Some words from the team:
Vicky and I work in Bath, also covering parts of Wiltshire and Somerset. We have been keen to ensure that ON-FIRE is accessible to everyone who is eligible, within our catchment area. We liaise closely with families to understand how best to support their involvement. We hear repeatedly from relatives of people with advancing disease that travelling to clinic can be really stressful and when they arrive they then have the challenge of finding a parking space! We have been delighted to be able to offer home visits to people to ensure that these challenges don’t stop them from contributing to ON-FIRE. We are always greeted warmly and always with the offer of tea. It’s a huge privilege to be able to include people who may otherwise miss out, by adapting our working style and heading out onto the highways and byways! – Ruth Blackman
Glasgow
The Glasgow Team:
Dr Claire Gall (PI)
Catriona McNeill
Linzi McCrorie
Diane Frew
Some words from the team:
We share the commitment in making a difference to people living with frontotemporal dementia (FTD) and the families who support them.
FTD is a complex and often misunderstood condition, which can have a profound impact on individuals and those closest to them. We feel privileged to meet and work with those affected by FTD and we are continually inspired by, and grateful for the generosity of those who take part in research. Every conversation and experience shared by study participants and their loved ones, helps us to understand FTD a little better.
Our hope is that, through this research, we can contribute to earlier diagnosis, improve treatments and gain a better understanding of the condition. Ultimately, working toward bringing hope, increased knowledge and meaningful change.
Cumbria, Northumberland, Tyne and Wear
The Newcastle team:
Dr Bob Barber (PI)
Rebecca Robson
Victoria Hetherington
Harry Brown
Jamie Berry
Some words from the team:
At Newcastle, we have extensive experience in delivering dementia research, encompassing both observational and treatment-based studies. We established our research register more than 18 years ago to support recruitment to these studies, with considerable success. However, volunteers with a diagnosis of FTD and other related disorders have historically been excluded from studies, as research has predominantly focused on Alzheimer’s disease (AD), dementia with Lewy bodies (DLB), and mild cognitive impairment (MCI).
We are therefore delighted to offer volunteers from our research register, as well as patients attending our nearby clinical services, the opportunity to participate in the ON-FIRE study. This study provides an important opportunity to expand our knowledge andunderstanding of blood-based biomarkers in rare dementia subtypes and to include a patient population that has traditionally beenunderrepresented in dementia research.
ReMind UK, Bath
The ReMind, Bath Team:
Dr Tomas Welsh (PI)
Hannah Oram
Stuti Jain
Victoria Greer
Some words from the team:
ON-FIRE presents such a valuable opportunity for us and our patients to get involved in research for FTD. The team behind ON-FIRE is proactive and attentive, making this collaboration empowering. We’re looking forward to being a part of this project as it continues!
Royal Hallamshire Hospital, Sheffield
The Sheffield Team:
Dr Simon Bell (PI)
Sister Jo Howe
Mary Sikaonga
Hester Astell
Some words from the team:
At the Royal Hallamshire Hospital we support the FTD research in South Yorkshire and the wider region. The team is made up of Dr Simon Bell, Sister Jo Howe, and Nurses Mary and Hester. The Sheffield site is also one of the countries first UK Dementia Trial Network centres for early phase clinical trials. We are hoping through our work with the DTN and other groups we can support clinical trials for people with FTD as they are few and far between at the moment.
We do lots of different types of research including making cell models of FTD out of the skin cells that people with the condition donate to us and clinical trials looking at how blood biomarkers may help us diagnose the condition. The ON-FIRE study is a great example of this. The whole team is committed to improving the care of people with all types of dementia through research.
Some members of our team attended the Dementia Futures Event in Sheffield on Tuesday the 8th of September, where Dr Bell presented the ON-FIRE Study.
Supported by Alzheimer’s Research UK, the event showcased dementia research being undertaken by PhD students and post-doctoral researchers at the University of Sheffield and across Yorkshire. Researchers shared their findings and discussed their potential impact on people affected by dementia. The event brought together healthcare professionals, members of the public, people living with dementia and their carers.
Research presented by the Sheffield Institute for Translational Neuroscience (SITraN) included work exploring genetic links between frontotemporal dementia (FTD) and motor neurone disease (MND), alongside potential gene-based treatments. Researchers are also investigating AI and brainwave analysis to support earlier detection of FTD and improve understanding of the condition.
University Hospital Southampton
The Southampton Team:
Christopher Kipps (PI)
Inês Rodrigues
Elena Reina
Veena Agarwal
Katarzyna Tluchowska
Arshi Iqbal
Natalie Shaw
Claudia Gomes
Ana Palhinha
Giorgia Cortorillo
Pamela Juan
John Owusu
Mavis Adeho
Anan Hossain
Some words from the team:
This FTD Awareness Week we would like to raise awareness of Frontotemporal Dementia (FTD), one of the most misunderstood neurodegenerative diseases.
Unlike many forms of dementia, FTD often begins with changes in personality, behaviour, language, and judgement rather than memory loss. Families frequently describe watching a loved one become “a different person” long before dementia is considered. Because FTD commonly affects people in their 40s to 60s, these symptoms can be mistaken for stress, depression or other life challenges, delaying diagnosis and support.
At UHS, our Neurodegenerative Research Team is proud to support studies such as ON-FIRE, which are helping to improve our understanding of FTD and its impact on patients and families. This research is vital for developing better ways to identify the disease earlier, improve care, and support the search for future treatments.
Every research participant plays an important role in advancing knowledge and bringing hope to the FTD community.
Swansea Bay University Health Board
The Swansea Team:
Dr Richard Bevan-Jones (PI)
Gemma Smith
Claire Chapman
Fintan McArdle
Elaine Brinkworth
Jenny Travers
Caroline Davies
Some words from the team:
The collaboration between Dr Bevan-Jones, Consultant Neurologist, the Neurology Team, and the Health and Care Research Wales Delivery Team at Swansea Bay University Health Board has been an extremely positive and rewarding experience.
Working towards the shared goal of improving our understanding of frontotemporal dementia has highlighted the importance of strong multidisciplinary partnerships. Dr Bevan-Jones has been exceptionally supportive, approachable, and committed throughout, fostering a collaborative environment in which clinical and research teams work seamlessly together to achieve shared objectives.
The ON-FIRE study provides an exciting opportunity to advance knowledge and understanding of frontotemporal dementia, a condition that has a profound impact on patients and their families. The close partnership between the Neurology Team and the Health and Care Research Wales Delivery Team has ensured the study is delivered to the highest standards, while maintaining excellent participant care and support throughout every stage of the research journey.
It has been a privilege to work alongside such dedicated colleagues on research that has the potential to make a meaningful difference to the lives of patients and their families, both now and in the future. This collaboration exemplifies how effective teamwork between clinical and research staff can contribute to high quality research and improved patient outcomes.
Oxford University Hospital
The Oxford University Team:
Dr Sofia Toniolo (PI)
Dr Sian Thompson (co-PI)
John Broulidakis
Rajesh Kumar
Andrew Fower
Some words from the team:
We cannot wait to get started with the online testing side of the project! We are excited both to offer our platform OCTAL to FTD patients across the UK through the network, and equally to try what is for us a new platform – Ignite – on our patients in Oxford.
Tees, Esk and Wear Valleys
The Tees, Esk and Wear Valleys Team:
Sarah Morris (PI)
William Clark
Some words from the team:
We are delighted to be part of the ON-FIRE study team at Tees, Esk and Wear Valleys NHS Foundation Trust. Our local team consists of Sarah Morris, Clinical Research Practitioner and Principal Investigator, and William Clark, Research Assistant. Having worked together on several dementia biomarker studies, we share a strong interest in improving our understanding of neurodegenerative diseases and helping to bring cutting-edge research opportunities to our local communities.
Frontotemporal Dementia (FTD) can have a significant impact on individuals and families, affecting behaviour, communication and everyday life. Studies such as ON-FIRE are essential because they help us explore the biological mechanisms underlying FTD, including the role that inflammation may play in disease development and progression.
We are proud to contribute to research that could improve diagnosis, support the development of future treatments and ultimately enhance the lives of people affected by FTD. Above all, we are grateful to the participants and families whose generosity and commitment make this important research possible.
University College London
The UCL Team:
Professor Jonathan Rohrer (PI)
Kerala Adams-Carr (co-PI)
Luna Nordenstrom
Rachael Dennis
Hannah Rosenheim
Clementine Cheyne
+ the extended lab!
Some words from the team:
We are very excited to be part of ON-FIRE and we are currently implementing our app Ignite as part of the network. Ignite is an iPad-based app developed by our team at UCL that uses cognitive tasks to help us understand how thinking and behaviour can change over time. One of the things we are particularly interested in is how digital technologies could help us detect early signs of FTD and related conditions. At the moment, changes in cognition can be difficult to detect, especially when they are subtle. Digital tools like Ignite could give us new ways to track these changes in people’s health more frequently and precisely, even from the comfort of their own homes.
University of Cambridge - Central Site
The Cambridge Team:
Professor Maura Malpetti (PI and CI)
Julia Goddard
James Dodds
Some words from the team:
We are so proud of what ON-FIRE has achieved in less than 2 years since recruitment began. Over 40 sites across the UK are deeply committed to improving the lives of people living with FTD, and we could not be more grateful for all their hard work, dedication and passion for FTD research, awareness, care and treatments. We look forward to continuing to see this community grow and drive forward real world impact for families affected by FTD.