About Martina Slapkova

Research Information Co-ordinator at the Motor Neurone Disease Association

‘There is an app for that’ – the wonders of technology in ALS

At the end of a very busy Day 2 of the Symposium, I sat down with my colleagues for a quick chat. After a while, one of them, who has been with the Association since 1995 told us how someone once asked him: ‘So if you look at the last 20 years, how has the world progressed to know more about MND, since there is still no cure to halt it?’. ‘Technology!’, he replied without hesitation. (Alright, he is a tech guy by occupation, so his opinion might be a bit biased, but he still proves the point I am trying to make).

Technology in the world of research has progressed incredibly far. From the ability to sequence the whole genome of a person in a fraction of the time (and price) that we were able to do a decade ago, to using delicate electrodes and sensors to explore what is happening inside our bodies.

Is telehealth the way to go?

Session 3B on the first day of the Symposium was dedicated to exploring how technology can improve patient care. Telehealth, a remote exchange of data between an individual and a healthcare professional to assist in the diagnosis and management of a condition, was the focus of the first two talks.

Ultimately, the goals of telehealth are to increase access to care for people, decrease the frequency of clinical visits and, as a nice addition to it all, to reduce clinical costs to the healthcare system. Dr Ray Dorsey from University of Rochester Medical Centre and his team have been investigating the use virtual appointments with people with chronic illnesses (such as Parkinson’s Disease or MND).

For people with reduced mobility who often rely on support from their carers, this could be a game changer – no prolonged waiting in the waiting rooms and hours spent commuting for short (but crucial) assessments. From the obtained data, the researchers also found out that a large proportion of people who already took part in this study also expressed higher satisfaction with the overall care they were given, while appreciating being in the comfort of their homes.

Building up on the topic of convenience of remote data collection was Dr Steve Perrin of the ALS Therapy Development Institute. He started his talk by reminding us all that, nowadays, there is a mobile app for pretty much everything – so why not use it to improve wellbeing of people living with MND.

Perrin - telehealth

Dr Steve Perrin (ALS TDI) – ‘There is an app for everything nowadays’

He presented findings on their Precision Medicine Programme, which combines collection of data from a physician (such as full genome screen, blood and skin samples), and the patient (self-reported ALSFRS scores, tracking of movement from accelerometers, and voice recordings).

Their analyses already showed promise in mapping accelerometer data and voice samples submitted by people with MND to their corresponding ALSFRS scores, which gives hope that one day, patients will have the option to measure the progression of their disease using easy-to-collect biomarkers. And allowing people to manage their own health and help them understand what the data mean would make quite a difference.

Do you think it can’t get better than that?

Read my mind and help me move

The last of the sessions was slightly different from the rest. Dr Leigh Hochberg of Harvard Medicinal School showed us how, using a few (very smart and complicated!) sensors, it is possible to move a prosthetic limb, assisted wheelchair or a cursor on a computer without the need to use a single muscle in the body.

By simply thinking about movement, a sensor implanted to the motor areas of our brains can read and translate the signal that marks our intention to move and feed this into a connected device (eg a computer) – this smart technology is called brain-computer interface (or BCI for short). The ultimate goal would be to have a miniature device that could be implanted into the brain of patient and that would act as its extension.

I think it is safe to say that the next 20 years (and quite likely even less than that) are likely to enjoy another technology ‘boom’ and it is intriguing to guess what it will bring us.


Read more about improving wellbeing and quality of life on Symposium LIVE pages.

Abstracts of technology-related talks and posters:

Oral communications

Session 3B: Technology and ALS

C15 – Enhancing neurological care through telemedicine
C16 – Will telehealth revolutionize clinical care for ALS patients?
C17 – BrainGate: toward restoring communication and mobility

Poster presentations

Session: Multidisciplinary care and improving quality of life

MDC18: Patients’ perspectives of multidisciplinary home-based telehealth for amyotrophic lateral sclerosis
MDC19: MDC-19 Efficacy of teleBCI for training and engaging in braincomputer interface communication
MDC20:  Brain computer-interface with P300-Speller: usability for disabled patients with amyotrophic lateral sclerosis
MDC21: Usability of eye tracking technology for increased communication aimed at patients with motor neuron disease

It’s that time of the year again… #alssymp

It was only one week after the 27th International Symposium on ALS/MND in Dublin had ended when we started the next stage of planning for Boston 2017. Now a year has passed and we are here again, waiting to learn about the exciting research that is happening throughout the world. But before we start talking science to you, I thought I would give you a whistle-stop tour of what it takes to organise the Symposium.

It all starts with a selection of a venue at least three years prior the event. This has to tick a number of boxes, including appropriate number and size of rooms for platform and poster presentations, a place for exhibitors, lunch, ease of access both inside the venue as well as outside with respect to the location from transport facilities and so on. A number of site visits are organised to ensure that we are familiar with the venue so that we can plan the location of the platform sessions, locations for exhibitors, lunch, meetings, and networking. And then the year of the event comes…

We begin to set up and test the abstract submission system to allow researchers to submit their scientific summaries, talk to potential sponsors, agree a schedule with our publisher for the abstracts, release the first announcement to give an idea of the themes that will be covered, review necessary documents and instructions for submitting authors, and plan for changes on the website for the whole year. Once the submission system opens in March, we start to receive abstracts – now over 550 abstracts every year!

The Programme Committee, chaired by Prof Kevin Talbot and composed of the MND Association staff members together with other invited professionals, then looks at all the submitted (and anonymised) abstracts to decide who will be offered an oral communication, poster presentation, or work in progress poster, or, alternatively, who will be rejected. Each year we also invite a number of additional speakers who are experts in their fields on the specific session themes. And then the fun begins…processing of the abstracts ready for publishing takes at least three months and involves more than half of the research team here at the MND Association. Additionally, the order of the individual posters has to be decided so that there is a logical thematic order within each theme.

At about this time we also start to plan Symposium communications to make sure that everyone knows what is happening during the Symposium, without actually being there. While it is not possible for us to live stream the event, we try to make everyone as close to the event as possible. This is mainly via blog articles or videos summarising what we heard at the Symposium, and live Tweets from us as well as other delegates using #alssymp. As the variety of the talks and posters is so wide, we try to organise it into smaller chunks – this year, we categorised them into five key topics, in order that follows the timeline ‘from bench to bedside’: Biomedical research, Diagnosis and prognosis, Why me? Causes of MND, Clinical trials and treatments, and Improving wellbeing and quality of life . You can find information about each of these topics on our Symposium LIVE webpages together with mentions of the individual sessions and talks corresponding to these.

In the few months before the Symposium, we are finalising the abstract book, programme, shortlisting of poster prize candidates, programming of the Symposium app, and together with our conference team we start to put together information for attending delegates – at this stage, there is lots of designing, printing and laminating involved. Finally, all materials get shipped to the venue more than a month before the event (to make sure it gets there in time), where it is usually managed by the Symposium hosts. This year, these are the ALS Therapy Development Institute and ALS Hope Foundation, who have been working hard to assure that the Symposium runs smoothly.

And that is how we end up here, on the day before the Symposium starts. With over 1,200 delegates registered to attend, the following three days will be filled with over 100 platform presentations and around 450 posters. We will post blog articles throughout the Symposium to update you on some of the sessions, and summarise the event day by day in ‘catch-up’ style blogs after the Symposium finishes.

If you would like to stay up to date with what is happening at the Symposium ‘as it happens’, follow #alssymp on Twitter on the days of the Symposium on 8-10 December.

Tirasemtiv not found effective for treatment of MND

In their official press release published on 21 November 2017, Cytokinetics Inc. announced that they will not be continuing work on tirasemtiv after disappointing results in the latest Phase 3 clinical trial. The trial, known under the acronym ‘VITALITY-ALS’, tested whether the drug has a beneficial effect on the breathing function and muscle strength of people with MND. This is very unfortunate news for everyone affected by the disease, however, Cytokinetics are already testing another compound with the hope that this will be more effective and better tolerated than tirasemtiv.

Tirasemtiv is a drug that aims to improve quality of life of people living with MND by increasing strength of their skeletal muscles (controlling body motion and posture) and therefore postponing muscle fatigue. It compensates for the missing nerve signal from a motor neurone to a muscle that instructs it to contract. Tirasemtiv activates a protein called troponin by increasing its sensitivity to calcium, which is crucial for muscle contraction. Continue reading

Networking to progress in the world of science: Mini-Symposium on MND

Conferences and symposia are a crucial part of the research world – not only for the amount of knowledge that is communicated to large audiences but also for the exchange of ideas on a more inter-personal level. Novel ideas are created there as well establishment of collaborations that might lead to new research projects and clinical trials – all in all, putting a bunch of researchers in a venue with a projector, coffee and biscuits can only lead to good things!

One of the recent events that I had the pleasure to attend was a small-scale conference – the Mini-Symposium on generic disease mechanisms in MND and other neurodegenerative disorders. Held at the Brighton and Sussex Medical School in late June, this event was a precursor to the inauguration of a new MND Care and Research Centre for Sussex, directed by Prof Nigel Leigh. Continue reading

Shining a light on our non-clinical fellow: Using blue light to control muscle movement

The MND Association is proud to support the brightest minds of MND research. Outside of general healthcare and biomedical project grants that are usually awarded to senior researchers, we also offer opportunities to young researchers – these take the form of PhD studentships and fellowships.

Fellowships are awarded to post-doctoral researchers who are able to support a research project as the leading investigator. Depending on their qualifications, the fellowship can either be clinical (for healthcare professionals) or non-clinical (for researchers with purely academic background). In the last round of non-clinical fellowship applications in October 2016, the MND Association awarded a senior fellowship to Dr Barney Bryson of University College London. In his upcoming project, due to start in August 2017, he will follow up on the findings he found together with his team, led by Prof Linda Greensmith. Continue reading

Life of an MND researcher – part 2: PhD edition

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.

In our previous article we introduced four MND researchers who gave us an insight what a typical day in the life of a researcher looks like and what carrying out a research study actually involves. In this continuation article, you will get the chance to look into the lives of four PhD students, who give us an overview of their projects and their usual daily duties. Continue reading

Collaborating to find treatment for MND

21 June – MND Awareness Day

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs. 

It is at the heart of the Association to fight MND by funding and promoting research into understanding the disease so that we can defeat it. However, we would not be able to fight this battle on our own and the support of various people is crucial to defeat this MND monster.

Everyone working in the field of MND research has one aim – to find what causes this disease and find a treatment to cure it. We have already written about the long elaborate process behind developing and licensing new drugs but we have not yet talked about the people who are essential for this process to run successfully. Continue reading

Life of an MND researcher: part 1

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.

We all know that rigorous research is the key to finding a cure for MND. Scientists are working hard every day to find the causes of MND, developing new treatments that would help tackle the disease and also looking for new ways to improve the quality of life of people currently living with the disease. But what does it take to have research at heart of everything you do? What is the typical day in the life of a researcher and what does carrying out a research study actually involves?

We asked eight researchers to give us an idea of what their research is all about and what their typical day looks like. Read about four of them in the following blog and keep an eye out for ‘Part 2: PhD edition‘ in the next few days… Continue reading

The journey of a drug – what it takes to be approved

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.

So far, there is no cure for MND. In the past 22 years, we have only seen approval of two drugs that were either shown to prolong the life of MND patients by several months (riluzole in 1995 in the US) or to slow down symptom progression (edaravone in 2015 in Japan). It is only reasonable that you might wonder ‘what is taking so long?’ or ‘why are there not more drugs available?’.

It is very competitive in the world of medicinal drugs. From thousands of chemical compounds that are gradually eliminated as they go through different stages of drug development, only one makes it near the finish line. This line represents approval for marketing authorisation and there is no guarantee that this ‘top compound’ will actually make it to the end. So let’s have a closer look at the individual stages that a potential drug has to go through in order to be crowned the champion. Continue reading

ANXA11 – another gene closer to understanding ALS

A new research paper has been published today in the Science Translational Medicine journal, describing a new gene implicated in developing MND. What is this gene and why is it important for our fight against MND?

Although they are not the sole cause of MND, genes play a big role in someone’s probability of developing the disease. A number of such genes that make a person susceptible to developing MND have already been identified, with most of them causing the rarer, inherited form of the disease.

A new addition to a list of genes that are related to development of ALS, the most common form of MND, has been discovered by researchers from King’s College London. Dr Bradley Smith and colleagues screened genetic data of an unusually high number of people of European origin: 751 with inherited – familial – ALS (fALS) and 180 with non-inherited – sporadic – ALS (sALS). Detailed analysis of this data found that specific mutations in the ANXA11 gene are associated with around 1% of all fALS and 1.7% of all sALS cases. Continue reading