Blog of the blog

11th June – EPDA/PDUK video

An interesting film was posted this week by the European Parkinson’s Disease Association (EPDA) and Parkinson’s UK. It deals important issue. The 6 minute video features UK Parkinson’s specialist neurologist Dr Anette Schrag and four people with Parkinson’s disease discussing the importance of good communication when doctors give their patients a Parkinson’s diagnosis.


10th June – Hitchin

Today I was in Hitchin town square with my local Parkinson’s UK support group (North Hertfordshire and Stevenage) for the annual Rotary Wellbeing and health day. It is an opportunity to highlight some of the local health related resources and support networks that are available to the local community. We were very lucky with the weather, and very grateful to all the folks who came by our stall.

Hitchin


1st June – Gutted

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We were very sorry to hear today of the passing of Tom Isaacs, founder of the Cure PD Trust.

In 1996 – at just 27-years of age – Tom, a London-based surveyor, was diagnosed with Parkinson’s disease. After dealing with the initial shock of it all, Tom embraced his situation and became a committed, tireless activist. He firstly walked the entire coastline of the UK to raise money and awareness for Parkinson’s disease.

tom isaacs

His book, “Shake well before use“, discusses that trip and adapting to life with Parkinson’s. It is a fantastic read. Upon returning from his epic walk, he (along with three others) founded and set up the Cure Parkinson’s Trust.

It is pretty safe to say that other than Michael J Fox, Tom has had the most impact on marshalling scientific research efforts to find a cure for Parkinson’s disease. And he did it all with style and humour.

This was a video of Tom in 2009, talking about life with Parkinson’s disease:

Here at SoPD HQ, we are gutted. His presence will be greatly missed.


31st May – 200 years

In her excellent book – ‘The Enlightened Mr. Parkinson: The Pioneering Life of a Forgotten English Surgeon’ (Icon Books Ltd) – Dr Cherry Lewis wrote that the earliest reference to Mr James Parkinson’s ‘An Essay on the Shaking Palsy’ was an advert placed in the Morning Chronicle of Saturday 31st May (1817), under a list of books “published this day”.

Given this information, we searched the Britishnewspaperarchive online and captured the image presented above.

Today is the 200th anniversary of the publication of ‘An Essay on the Shaking Palsy’.

The-essay


29th May – Mike Tindall

May be of interest – English Rugby player Mike Tindall discussing his father’s battle with Parkinson’s disease:


24th May – The monotherapy approach to Parkinson’s disease trials

I have had a series of interesting discussions lately with some folks online regarding experimental treatments for Parkinson’s disease. In most of the clinical trials that we currently have ongoing, we are testing one treatment for it’s efficacy against the condition. But is this the wrong approach?

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If a particular experimental drug fails, does this mean it has no future against PD? Or should we be next testing the drug in combination with other drugs?

This idea is potentially expensive for institutions trialling these drugs, but it is not a stupid idea. In cancer, pharmaceutical companies will routinely run small trials involving combinations of drugs, targeting different biological pathways that are affected in a tumour. By only administering drugs for one particular pathway, the tumour can rely on the other pathways to help it survive and thrive. By targeting multiple pathways, they can make life harder for the tumour, slowing it’s progress and even shrinking it or killing it off entirely.

Should we not be considering such an approach for Parkinson’s disease? Rather than just targeting one antioxidant pathway in the condition, could we also be adding in an iron chelator or alpha synuclein inhibitor in combination?

Alternatively, could we design medications that have dual functions? This idea is actually already being tested: This week, researchers published results regarding the neuroprotective properties of a novel multifunctional brain penetrant dopamine D2/D3 agonist AND iron chelator, called D-607.

Microsoft Word - np_6721_Graphical Abstract

Source: Sciencedirect

One drug, many functions.

It’s an interesting idea. One that should be further discussed.


20th May – Generation gap

I gave a talk about the research/science of Parkinson’s disease at a local support group today. A wonderful gathering of people (about 60-80 in the hall) just north-east of London, a very well organised group – dynamic and proactive. Awesome stuff.

One interesting observation though: The last part of my talk described how people could get involved with the research (if they chose to), both directly or indirectly. But during a Q & A session afterwards, a lady in the audience noted that many of the resources I spoke about regarding research involvement are all online (for example umotif, clinicrowd, etc), and she doesn’t have a smart phone or computer at home.

I confess – being self oriented as I am – I stood there for a moment wondering who if anyone was actually reading my blog.

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But her observation was valid.

There are many of her generation who are either not confident enough to take on new technology or are too weary of it. Or they simply don’t want it in their lives. This is all fine, and it shows itself at the support branch level in many ways. For example, most support groups still posts out their newsletters to a lot of their members.

This is not to say that the PD community isn’t online and using all of the tools. But it did leave me wondering what percentage of the older affected individuals are not being reached and involved, and how this situation could be improved.


19th May – I am Research

Today we were supporting the ‘I am research‘ campaign (#iamresearch). This was a National Institute for Health Research initiative which gave patients, the public and health & social care research professionals a chance to shout out about how fantastic research is. The aim of the campaign was to raise awareness of the benefits of research and the positive impact it has on people’s lives. Researchers were asked to explain why ‘I am Research’.

This was my (slightly cheesy) addition to effort:


17th May – Searching the site

In order to make it easier for readers to find what they are looking for on the SoPD website, we have added a ‘search’ tool on the top of the right-hand column on each page.

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Please let us know how you get on when using it – we would be very interested to know.

Thanks!


15th May – Wikiversity

I was kindly pointed towards a rather amazing resource available on the web called The Science Behind Parkinson’s (great name!). We were not aware of it and we thought we’d bring it to the attention of our readers. It picks up the baton where we here at the SoPD fail so miserably by providing a fantastic, searchable database of all things Parkinson’s disease-related.

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Source: Wikipedia

The purpose of the material provided at The Science Behind Parkinson’s is to:

  • highlight interesting topics in current Parkinson’s research
  • explain their significance and background
  • describe the questions answered and identify the questions still unanswered
  • say how the work fits into the bigger picture and what other researchers are doing
  • examine hypotheses and to raise implications
  • identify possible new lines of enquiry and new implications for research strategy

As I say, a fantastic resource, and I encourage readers to have a look and search the database for topics of interest to you.


14th May – Microsoft

A wonderful re-telling of the story of Emma Lawton’s tremor defeating bracelet has been published on the Microsoft blog. It goes into some detail about how Emma and inventor Haiyan Zhang dealt with the challenge of treating tremor with tech. A really interesting read – Click here to see the article.


11th May – Empowerment

Sara Riggare: Self tracking PwP – amazing woman – powerful message.


6th May – Youtube superstar

I got my five seconds of fame today by supporting David Sangster’s PD365 vlog:

Brilliant project. If you are not subscribed – you should be!


4th May – Parkinson’s UK’s Cell tranplantation video

Last year, the Gretschen Amphlet Memorial lecture in Cambridge (UK) was given by Prof Roger Barker, who is a world leading expert on the topic of cell transplantation.

He also happens to be my boss!

Parkinson’s UK have kindly made the lecture available online. It is worth watching if you are interested in the state of cell transplantation therapy for Parkinson’s disease:


3rd May – Failure

I recently attended a workshop for Parkinson’s researchers and lay people which was organised to discuss how we can improve ‘patient education’. One of the researchers spoke and their message was important I thought.

They spoke of the importance of understanding failure.

As researchers, we do experiments everyday and not all of them work. Often you don’t get the result you were hoping for. And sometimes things go wrong with equipment, etc. It was important for lay people to understand this aspect of scientific research though, the speaker said.

They then added to this the fact that only 8% of drugs that begin the clinical trial process – for brain related conditions – will succeed in passing all three phases and being accepted for clinical use. Just 8%!

Now as a researcher, I am used to this continuous process of trial-and-error in the lab (my first boss once said “9 times out of 10 in science things go wrong or don’t work, but it’s that one time… that one time when things go right…. that you should worry because statistically speaking it should have gone wrong!” – they were kidding of course). As a researcher you learn to build up a resilience to this repetitive cycle. I’m also used to experimental drugs for brain failing at the clinical stage. Why? Because brain is hard.

But from the atmosphere in the room that day, it was apparent that many of the lay people were not ready for this revelation, even if it needed to be said. And this is why I am repeating it here. Science is a bit like making your way across a frozen lake in the early spring, and you have to test your footing with each new step. I suspect a lot of the general public don’t understand or appreciate this.


1st May – GDNF: the Bristol trial

Parkinson’s UK have recently added another interesting post to their blog – Click here to read about the team running the Bristol GDNF trial.

A fascinating bit of insight into the behind the scenes aspects of a clinical trial.


25th April – bad media

The one thing I didn’t want this blog of the blog column to become is a place for me to complain because if you give me a soap box I’ll be happy as my daughter in a chocolate factory. But (obviously there was a but coming) I believe that the media needs to be more careful with their headlines when announcing new research regarding neurodegenerative conditions, like Parkinson’s disease.

A recent example being the new stress-hormone cortisol research (click here to read our post on this). The press release announcing the publication of these results read: “Parkinson’s disease will be curable with cortisol” and for a while the press release had a photo with this caption:

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Thankfully the photo has been removed. While the research associated with the press release is very interesting, the title is an irresponsible exaggeration and the findings do not provide us with “a cure”. The results are preliminary and need to be independently validated before we get too excited.

More importantly, it is not fair for a community that desperately desires a disease halting/altering treatment to be regularly confronted with mis-leading/sensationalist headlines. More consideration should be given to these matters.

Ok, that’s my gripe over and done with.


24th April – Genuine interest

I was in the town of Leighton Buzzard today, speaking to the local Parkinson’s UK support group there about ‘the Science of Parkinson’s disease’ – the research that we are doing in the lab, what is happening in the wider research community, and how people can get involved (if they chose to).

They were a very friendly crowd, but I was particularly impressed with the genuine level of interest in my descriptions of some online research activities. In fact, one lady in the audience was so impressed with the idea of the uMotif smartphone application (which we have discussed before – click here), that she downloaded the app right there and then! She didn’t even wait for me to finish my spiel. I was well impressed!

umotif


22nd April – Marching

Here at SoPD, we like to think of ourselves as apolitical. That said, we fully support the March for Science activities that are going on around the world today.

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Why?

Because the alternative is simply non-sensical.


19th April – This is awesome!

If you are not watching Emma Lawton‘s Youtube channel, then you should go over there now and subscribe – Click here to do so. She and David Sangster are vlogging everyday for an entire year about being young and living with Parkinson’s disease.

Today’s episode from Emma is particularly touching – she made a Uber driver cry, but not for the reason that you may think:


15th April – Parkinson’s Awareness

We were in the main market of my home town of Hitchin today with my local support branch of Parkinson’s UK – North Hertfordshire and Stevenage branch. We were there to raise awareness about Parkinson’s disease on this the 200th Anniversary of Mr James Parkinson’s first description. It was a lovely day and the local community were very generous. It is amazing how many people came up to our stall to discuss the condition and how it is affecting their family or a particular friend.

Stall

Prime real estate in the market square of Hitchin.

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Genuine interest from the local community.


12th April – Awesome-ness

From David Sangster – the man, the myth, the legend. Total rockstar in the Parkinson’s community:


10th March – SoPD will be off line for a wee bit

It’s a personal thing. Need to deal with something. Everything is ok, just won’t be here. Fear not, we’ll be back


3rd March – Inspirational laughter

Recently we had a couple of guys in the clinic waiting room having a fantastic time. They were laughing and making fun of each other, keeping everyone in the room entertained.

The thing that was most impressive about the scene, however, is that both men had Huntington’s disease (a genetic neurodegenerative condition, characterised by severe involuntary movement issues – click here to learn more about it).

I should add that they had both only just met that morning in the lounge, but had quickly developed a camaraderie. It was inspirational to the everyone, including the researchers working in the background. Despite what these two men were dealing with in terms of their disease, they still took the time to enjoy life.

There is a lesson in there for everyone.


28th February 2017 – OPEN ACCESS data and research

This is Gert.

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Prof Gert Storm. Source: Nature

He’s a dude.

Prof Gert Storm (from the Catholic University of Leuven) is an editor on the board of a journal published by the prestigious American Psychological Association (APA). He has been asked to resign (and says that he will not) because of his controversial decision to reject manuscripts of scientific research if the authors refuse to make their underlying data publicly available.

This is part of a bold move by a group called the Peer Reviewers’ Openness Initiative which is advocating for OPEN ACCESS to all research data. Here at the SoPD, we fully agree with this policy (with the one exception being in cases with ethical reasons for not providing access to data, eg. identifiable information). We would actually advocate taking the measure one step further (which it ultimately will be taken) and have OPEN ACCESS to all research reports. At present the bulk of research reports are published in journals owned by large publishing companies which profit from providing subscriptions. This system worked back in the day when journals were printed and thus incurred serious costs, but now everything is electronic.

In addition, in both cases (OPEN ACCESS to all research data and research publications) the bulk of the funding paying for the research is coming from tax payers and charitable groups. If public funds are paying for the research, why should individuals be allowed to horde data or profit from the publication of it?

These are the sorts of battles going on behind the scenes in the research world, and if we have to take a side:

We are with Gert.


25th February 2017 – Facebook page

facebook_like_logo_1With the goal of reaching more of the Parkinson’s disease community, we now have a Facebook page. Feel free to like or follow us.

If you are not yet aware, we are also on twitter @ScienceofPD, where we provide more regular updates on recently published Parkinson’s related research. This is oriented more towards researchers working in the Parkinson’s disease field, but there will be information of interest to a general audience as well.

All part of our 2017 plans to expand our offerings.


24th February 2017 – First induced stem cell clinical trial for Parkinson’s disease?

I saw this article published today indicating that Dr Jun Takahashi and colleagues in Kyoto (Japan) are looking to start clinical trials for ‘induced pluripotent stem’ (IPS) cells in early 2018. This approach will allow stem cells to be generated from patient’s own skin cells to be turned into dopamine neurons for transplantation.

Generating transplantable cells from a subject’s own skin is an important part of making transplantation therapy a reality, as it will hopefully limit the need to suppress the immune system. Currently, cell transplantation procedures require immune system suppression medications to be taken for long periods after the procedure, to prevent the body from attacking the transplanted cells.

Given that the cells are coming from a foreign donor, the immune system views the transplanted cells as ‘not self’ and removes them (rather efficiently). IPS cells gets around this problem as the transplanted cells are ‘self’ and the immune system will hopefully recognise them as just another part of the body.

Research on IPS cells has come a long way since the procedure to change skin cells into stem cells was first discovered in 2006 (Click here to read that research report). Taking the procedure to the clinic has only recently been given the green light by regulators in Japan (the first country to attempt this) – a clinical trial for transplanting IPS cells into the eye has just been given the ok this month (click here to read more on this). It will be interesting to see how things go in setting up a clinical trial for transplanting IPS cell-derived dopamine neurons into the brains of people with Parkinson’s disease.

We will be watching this space with particular interest.


23rd February 2017 – Science communication

top-50-badgeWe have recently been made aware that Feedspot (a ranking system for the web) has put the SoPD at no. 16  out of the top 50 blogs and websites.

Our first award in the world of Science communication!


In other news, I recently discovered Sophie Ward over at Soph’s Notes (and on her twitter account: @sophsnotes). Have never met her, but I like her energy and quirky style.

She recently graduated Oxford University and is now keen to enter the world of science communication. Her goal is “to engage more people, especially young girls, in the scientific world” – a noble and worthwhile cause.

She has started with educating people about Parkinson’s disease, and is doing this through a series of videos:

Entertaining (and educational) stuff.

Hope she keeps it up, and in 10 years time looks back at these videos with a smile.


22nd February 2017 – First entry

This is a new feature. Let’s see how it goes:

2017

Source: EddiePlayFair

Few people realise it, but 2017 is a really big year for Parkinson’s disease.

Yes, it’s the 200 year anniversary since Dr James P. first described the condition that went on to bear his name, and we should observe this occasion by bringing attention and awareness to the disease.

But it is also an important year for Parkinson’s disease research because there are some big roles of the dice in play.

Primary amongst these big bets are the various clinical trials focused on stopping the spread of the protein alpha synuclein – chef amongst them is the Phase II trial of the vaccine produced by the Austrian company AFFiRis (Click here to read more on this). We are expecting the next set of results in the second half of this year and they will be important for several reasons.

  1. They will be our first indication of whether our theory of alpha synuclein is correct. If this and other alpha synuclein trials fail, we will need to go back to the drawing board with regards to our ideas about what is causing Parkinson’s disease.
  2. If the trial works, however, it will be a huge leap forward for the community. And every generation from now onwards will be vaccinated before Parkinson’s disease can strike – just imagine: this could be the last generation of humans to suffer Parkinson’s disease.

In addition to this, we have all kinds of new clinical trials and research ventures kicking off (See our New year’s ‘The road ahead’ post for more on these).

Interesting times.