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Follow-up campaign
We are grateful for all the backers in our original campaign. The following figure shows how the money raised will be spent.
The world first digital therapy platform
for seizure control
We are raising funds to develop the therapy platform
Previously reported on (click logo to read):
Sponsored by:
Impact of therapy transformation
by digital technology
What is ACRT?
ACRT is a behavioural therapy for developing control of seizures. Through interactive online sessions, a participant will develop a specific set of skills to prevent and stop seizures. Once a participant obtain these skills, the effect can last for many years. ACRT is a non-invasive, side-effect free, effective and affordable therapy.
ACRT consists of 12 sessions, each session lasting about 45 minutes. To achieve the best effect, we recommend allocating three sessions a week (e.g. Monday, Wednesday and Friday) over a 4-week period.
During each session, you will also receive instructions and practice the technique, which you will then be able to start applying in your daily life.
How does ACRT work?
The therapy embodies both physiological and psychological approaches. Our thoughts and emotions are closely linked to our bodily responses and behaviour. Events in our daily lives trigger thoughts that in turn give rise to emotions that change both our bodily stress responses and our behaviour.
Psychological treatments, such as Cognitive Behavioural Therapy (CBT), argue that psychological distress is caused by distorted thoughts (or thinking habit) that trigger negative emotions and unhelpful behaviours. CBT helps you identify these distorted thoughts and correct them so that you can have more realistic and balanced way of thinking.
ACRT extends this CBT model by also
taking a more holistic account of the role of the body in the expression of emotional
feelings and thoughts, and by working directly on physiological aspects of well-being.
Published research shows that more
than 80% of people with epilepsy consider stress and anxiety to be a major factor in causing seizures. It is therefore very important to understand the mechanisms
of how the mind, brain and body interact.
Drug treatments on their own cannot give this understanding
Using ACRT, you will see how your body responds to your thinking and emotion. By receiving visual feedback about how your body reacts, you will be able to train yourself to become more sensitive to your bodily reactions and control your body’s state of alertness. Through this process, you will also learn how to stabilize your emotion.
Who will benefit?
People with epilepsy who experience brief
auras are particularly good candidates for this type of therapy. However this is
by no means a requirement for a successful outcome. There are people without
any aura who reduce seizures by more than two thirds or more of seizures after a month of therapy.
A modified set of instructions is given in the platform for those people who do
not have an aura. People whose seizures occur predominantly with stress,
anxiety and low mood are also good candidates. Unfortunately, clinical
experience suggests that ACRT in its present form does not work as well for people who have a significant learning disability.
Did you know?
- About one in hundred people suffer from epilepsy. 600,000 people in the UK and 50 million worldwide.
- Of these 30% are drug resistant. 180,000 people in the UK and 15 million people worldwide.
- The cost of surgical treatment is $15,581 - $27,000 / patient (Heaney & Begley, 2002 Epilepsia). In the UK, there are about 1000 operations for epilepsy conducted every year.
- The annual cost of uncontrolled epilepsy is £3,508/ patient (Platt & Sperling, 2002 Epilepsia).
- About $ 13 billion worth of anti-epileptic drugs are prescribed every year in the world (Mackey, 2010 Nature).
Considering the above together, an effective,
non-invasive, accessible and affordable behavioural therapy for epilepsy represents a worthwhile goal that will impact significantly on the
lives of people who suffer from, or whose lives are otherwise affected by,
epilepsy.
About Dr Yoko Nagai
Dr Yoko Nagai began her research in electrodermal biofeedback therapy for epilepsy in 1997. This research has since attracted scientific research funding of over £300,000 that has enabled clinical trials and a deeper understanding of the brain mechanisms by which the therapy can reduce the occurrence of epileptic seizures. Dr Nagai also founded the Biofeedback Clinic in 2005, in response to demand from patients at the National Hospital for Neurology and Neurosurgery, University College London.
At the clinic, she treated people with epilepsy on a private basis, enabling her to continue to pursue her university research activity. There are many advantages to face-to-face therapy, but only a few people can be treated at a time, and this can be frustrating for the majority of people who wish to access the therapy in this form. Dr Nagai is now seeking to share her expertise and treatment with people globally who are in need for this effective non-drug therapy, which is termed Autonomic Cognitive Rehabituation Training (ACRT).
Science
Dr Nagai's research started with investigations
into how brain and peripheral body reactions are related each other. We think that when our brain gets excited, our body does too, but it is not always the case.
Dr Nagai measures and observes a body
signal called electrodermal activity (EDA)/Galvanic Skin Response (GSR) which
is very sensitive to our thoughts and emotions. You may know already that EDA
is used in lie detector tests. Dr Nagai’s research has extensively
investigated how changes in EDA also modulate different brain signals. To this end Dr Nagai has applied tools
including electroencephalography (EEG) and functional MRI (fMRI). For people
who would like to know more, the ACRT platform will have "a science
box" to click, where you can get all the information in lay terms.
The results from the clinical trial.
(adapted from Nagai et al. Epilepsy and Behaviour 2004, Vol 5/2: 216-223.)
(adapted from Nagai et al. Psychosomatic Medicine 2009, 71: 84-92.)
These participants all had drug resistant epilepsy,
and had been on different types of medication for many years
(for some of them, over 20years).
The effect of the treatments over three years
(adapted from Nagai et al. Epilepsy Research 2014, 108: 149-52.)
(adapted from Nagai et al. Epilepsy Research 2014, 108: 149-52.)
Once a participant learns the skill of controlling seizures through the training sessions, the effect can last for many years.
The functional activity of distinct brain regions changes
(adapted from Nagai et al. Neuroimage 2004, 22:243-251.)
The functional activity of distinct brain
regions changes over the course of the therapy. Our research shows that one
month of ACRT training increases resilience of people to anxiety-related
seizure attacks.
Dr Nagai is currently investigating further
neural mechanisms through which ACRT helps seizure control. This
project is funded by a UK major research charitable body, the Wellcome Trust.
Timeline
Why Crowd fund?
In the field of epilepsy research, most of scientific funding is directed at drug research and understanding genetic associations. Consequently, research into behavioural treatments attracts very little investment (although Dr Nagai is one of a very few lucky scientists able to maintain active research in this area funded by research grants). This fact also means that behavioural treatments do not get the same priority or attention at scientific conferences and where there are sessions on the topic, these are often poorly attended. This creates a vicious circle.
Without exposing this research to the medical community and to patients with epilepsy, this effective new therapy, which could benefit many people with epilepsy, may remain confined to scientific research. We very much feel that the time is right for us to disseminate Dr Nagai's expertise and make her treatment accessible for as many people as might need this new approach.
Crowd funding was chosen as the route to make this possible as it will facilitate bringing this therapy quickly to patients, through the investment of people directly interested in the success of this approach. Crowd-funding also presents the best opportunity to increase awareness and facilitate the implementation of this non-invasive behavioural therapy for epilepsy.
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