Blog of the blog

31st May – Tom

Today represents the one year anniversary since the passing of Tom Isaacs:

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Tom was one of the co-founders of the Cure PD Trust.

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

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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 and Muhammad Ali, Tom has had the most impact on marshaling scientific research efforts to find a cure for Parkinson’s.

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 were gutted by his passing, and wanted to make a special note here.


20th May – Everydayhealth.com

Was flattered this week to be recognised by Everydayhealth.com as one of their favourite websites for Parkinson’s.

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17th April – Gretchen Amphlet

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I was flattered and honoured when Parkinson’s UK invited me to present some of the preliminary results from the Parkinson’s UK/BIRAX2 breath analysis study their annual Gretschen Amphlet lectures evening.

It is a great event – set in a lovely setting – that is held in Cambridge (UK) each year in honour of Gretschen Amphlet, who was a long-time resident of Cambridge who lived with Parkinson’s.

If you would like to watch the talk, Parkinson’s UK have kindly filmed the entire evening and made it available (see below – and I recommend that you watch the talk by Professor Oliver Bandmann (of the Sheffield Institute of Translational Neuroscience) which followed my talk in which he discusses how his group are changing the way Parkinson’s will be diagnosed and treated (in addition, he announced that they have received funding to conduct a clinical trial on UDCA in Parkinson’s – Click here to read more about UDCA).


4th April – St Ives

I was out in St Ives (Cambridge) today talking to the Huntingdon/St Ives Parkinson’s UK support branch today, about some breath taking research. Great group!

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1st April – No Joke

April is Parkinson’s Awareness month. Start raising some awareness!

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I particularly like the World Parkinson’s Congress haiku contest. Here is my effort:

Title: ‘G2019S’
Lurking silently
A hyperactive protein
needs inhibition

Wait, I’ve got another one:
Think I’m going mad
Now seeing world through haiku
Thank you WPC


19th March – North Hertfordshire AGM

This afternoon I was the guest speaker at my local North Hertfordshire Parkinson’s UK support branch group today at their annual general meeting. Gave them a talk entitled: “Update on where things are in the world of Parkinson’s research” (basically a very similar talk to the one I gave in Loughborough last year – with a few updates). Here is the Loughborough talk:


6th March – Edmond J Safra lectures

This evening I attended the Edmond J Safra memorial lecture at King’s College London. This year, Professor Marios Politis and members of his research group were presenting lectures on “How can technology improve diagnosis and treatment for Parkinson’s”. And a question from the audience resulted in a post on this website – click here to read about the “Evolutionary advantage of Parkinson’s”.

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5th March – Parkinson’s UK/BIRAX2 workshop

Today I presented data (with Prof Hossam Haick – in the image below) in London at the British Council BIRAX2 workshop regarding the Parkinson’s UK/BIRAX2 Breath analysis study (Click here to learn more about that project).

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31st January – Great Abington Partridge group

Tonight, myself and a colleague spoke at the Great Abington Partridge group – a group of gentlemen that gather on Wednesday evenings (in January and February) for an intellectual discussion and a pint (or three). Very enjoyable evening.

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23rd January – Future of diagnosis/monitoring

OnTuesday 17th April,Professor Oliver Bandmann (of the Sheffield Institute of Translational Neuroscience) and myself will be presenting lectures at the Parkinson’s UK Gretschen Amphlett memorial lecture in Cambridge, UK. The presentations will discuss research focused on simple tests that could have a major impact on how we diagnose and monitor Parkinson’s in the future.

The event will be streamed live over the internet (Eek!) and you can watch it via this link:


8th January – Do what you can’t


1st January – and a Happy New Year!

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25th December – Happy holidays everyone!

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10th December – Xmas tunes

A catchy tune for Xmas – made by a nice guy – for a good cause:


3rd December – Edinburgh

A fascinating lecture on cell transplantation for Parkinson’s was given by Dr Tilo Kunath of the MRC Centre for Regenerative Medicine (University of Edinburgh) at the Edinburgh Parkinson’s Research Interest Group on Saturday 2nd December 2017. There is also a very interesting presentation given by Leona Braund (former PE teacher diagnosed with Parkinson’s – now advocate) on physio therapy. A video of the presentations has been placed online.

It is recommended viewing – Click here to watch it.

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1st December – Dilemma of Success

I have recently written a post for the Parkinson’s UK excellent blog on Medium. This one explores a hypothetical situation that we may very well face in the not-so-distant future.

It’s called the Dilemma of Success.

I think it is a serious matter – one which the Parkinson’s community needs to discuss and start planning for. I would appreciate everyone’s thoughts on it.

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Photo by Kristopher Roller on Unsplash


30th November – Interview

Today an interview of yours truly was posted on the Tomorrow’s Edition website. In that interview I was asked a series of interesting questions regarding science communication and Parkinson’s research.

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Benjamin Stecher, who runs the Tomorrow Edition website, has been diagnosed with young onset Parkinson’s and he is committed to travelling around the world, meeting researchers and members of the Parkinson’s community.

His website is a must read for anyone interested in Parkinson’s research and new areas of technology.


21st November – Westminster

So today, Gaynor Edwards of SpotlightYOPD invited myself and others down to Westminster to have a chat with Nicklaus Thomas-Symonds MP – Member of Parliament for Torfaen – about getting more attention and recognition of young-onset Parkinson’s (YOPD), particularly with regards to rare disease status (according to NICE guidelines).

It was an interesting discussion, but Steve Brine MP – the Parliamentary Under Secretary of State for Public Health and Primary Care – was unable to meet with us, which was disappointing.

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18th November – Loughbrough

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I spoke at the 6th Annual East Midlands Parkinson’s Research Support Network meeting at the Link Hotel, Loughborough today. The group is organised and run by the local Parkinson’s community and supported by Parkinson’s UK.

I was given two speaking sessions (20 minutes each) which I divided into “Where we are now with Parkinson’s research” and “Where we are going with Parkinson’s research”. I am hoping to put both sets of slides on the website shortly for those interested.


16th November – James

Took a day of annual leave today and wandered back down to London to the James Parkinson Memorial symposium at London Hospital in White Chapel. A variety of speakers spoke about all aspects of James Parkinson’s life. All very interesting lectures, including this one about James the political radical by Dr Patrick Lewis (Reading University):


15th November – Critical Pathways

Tonight Parkinson’s UK invited folks along to the Florence Pite Memorial lecture series, this year entitled “Changing the face of clinical trial for Parkinson’s”.

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A very interesting discussion about the critical pathways program, the future of clinical trials and also a wonderful speech by Mrs Lesley Gosden (a Parkinson’s sufferer who took part in the Bristol GDNF clinical trial). Her speech was well-crafted and from the heart. The event was streamed live, but if you missed it you can watch it on Youtube (Lesley’s speech starts at 7:00 minutes into the film – it is worth watching!):


8th November – PDUK

Back in London today at a Parkinson’s UK meeting… and this one takes the cake for best location: The Winston Churchill War Rooms!

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Great meeting. Very interesting discussions. Many thanks to Parkinson’s UK for organising the event.


7th November – CPT

I was presenting at the Cure Parkinson’s Trust annual research review meeting today in London. A very interesting event that had a lot of interesting discussions surrounding the Exenatide/Bydureon clinical trial and also patient advocacy/research involvement.

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Many thanks to the CPT for the invitation to speak. They were filming the event so I’ll keep an eye out for the video (cringe – #face4radio; #voice4silentfilm).

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31st October – No. 10

The British Prime Minister, Theresa May, hosted a reception evening at No.10 Downing Street, to observe the 200th anniversary of the first description of Parkinson’s disease and also to acknowledge the work of Parkinson’s UK.

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30th October – Essential viewing

Yesterday, Michael J Fox was interviewed by Jane Pauley on the CBS TV show Sunday morning. It was a very personal and revealing interview of Mr Fox’s struggle with Parkinson’s and his efforts to cure it.

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It is essential viewing for anyone in the community as it strikes so many chords. I don’t want to say any more because I don’t want to affect anyone’s impressions of it.

Just go and watch it (Click here to see the interview).


26th October – Presentations

It has been a busy 10 days of presentations: First Ely Parkinson’s UK support group, then West Herts Parkinson’s UK support group and yesterday Peterborough Parkinson’s UK support group.

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I had an interesting question pop up in Peterborough: if you had infinite resources, what where would you focus the money with regards to Parkinson’s research?

I said: “Given the incredible speed of the research today, I am confident that we will make significant progress within the next decade or so, so that my daughter’s generation will never have to worry about this condition. It is going to happen regardless of any extra intervention. So I would focus the money on funding current clinical trials, particularly of the un-patented compounds that could potentially help the affected population now. Especially on drugs (such as UWA120) that could help folks with dyskinesias.”

I would be interested in any opinions on this answer.


23rd October – Is this dangerous?

I met a person in the clinic a month or so ago who spooked me somewhat.

We usually ask folks to provide a list of their medications and supplementals for their file that we keep as part of their assessment. In addition to their standard treatment regime, this particular individual provided a list of supplements that was ‘as long as my arm’. Almost everything was there (Resveratrol, NAC, mannitol, etc), and I was left wondering whether there was any room for actual food in their daily nutritional intake.

The episode has left me shaken and questioning if this website project is such a wise idea. I was honestly terrified as I sat there with them that they would start talking about “this great website called ‘the research of Parkinson’s’ or something”.

Truth be known, if our roles were reversed, I would probably be trying everything under the sun as well. But I hope that I would be taking a slightly more disciplined approach. Understand that some of these supplements can affect prescribed treatment regimes, via various chemical interactions. In addition, if one has a particular genetic variant that renders them incapable of effectively utilising one of these supplements, then it is a pointless waste of effort (and money) taking said supplement.

I have always considered science communication efforts (like this website) to be a necessary thing, in order for the Parkinson’s community to be able to make informed decisions if they decide to partake in research or a clinical trial. Putting all of this information in the public domain comes with a danger, however, that desperate people will act on it (regardless of warnings).

What to do, what to do?

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19th October – Technical issues

I was down in Watford today giving a presentation to the West Herts Parkinson’s UK support group there. A wonderful bunch of folks. A very well-run group. But yours truly forgot to take the cable that connects my laptop to the projector system.

Not to worry I said, I can manage without. And I then proceeded to do the talk without slides or images. No easy task, but the audience was very kind. I just hope some of what I said made sense. Chatting with them afterwards indicated that yes, some of it was intelligible.


17th October – Too much

I have previous stated that it is getting very difficult to keep up with all of the Parkinson’s-related research going on at present, but today a colleague provided an interesting twist on this topic.

They went for a job interview for university research faculty position (basically, being given permission to set up shop and start a research lab), and they were told that they didn’t get the job “because there’s too much Parkinson’s research going on at present”

?!??

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13th October – Sunday

On Sunday 15th October Parkinson’s UK will be holding their Research Support Network Conference. The event is sold out, but starting at 10:00 AM you can watch the various presentations as they are live streamed across the internet.

It should make for very interesting viewing.


12th October – Medium

I recently wrote a post for Parkinson’s UK‘s medium website. It highlights the Parkinson’s UK/BIRAX2 Breath Analysis study that I am co-ordinating at work. To read the post – Click here.


5th October – Oxford

Recently the Oxford Parkinson’s Disease Centre (which is funded by Parkinson’s UK) had an open day in which they discuss a lot of the research that they are doing. They have kindly filmed most of the presentations that were made on the day and provided them online. It makes for very interesting viewing.

To view all of the videos of the Oxford Parkinson’s disease Open day – Click here.


30th September – Frustration

Long time readers will know that one of my pet peeves is the lack of OPEN ACCESS research reports. I can understand that back in the day large publishing houses (with the resources required for printing thousands of copies of scientific journals) were a necessary evil. In the modern era, however, they sometimes strike me as just an evil.

I work at one of the best universities in the world (not bragging, just providing context), and I am regularly frustrated by the lack of access we have to published research. I am continuously confronted by journal websites that have ‘pay-to-view’ walls blocking access. My university simply cannot justify the expense demanded by some of these companies, and as a result researchers (who need access to the research) are blocked.

This system does my head in. Tax-payer and charity money funds the vast majority of the research being conducted, so why doesn’t the tax payer have access to it? And why is an archaic industry being allowed to maintain a broken business model? Seriously.

Sorry for the rant. I’m trying to write a post at the moment and I can’t access the research reports I need to finish the post. Very frustrating.


27th September – Grand Challenge

The Grand Challenges in Parkinson’s Disease and Rallying to the Challenge conference kicks off today at the Van Andel Institute in Grand Rapids (Michigan). For those of us who can not make it to the event, there will be a Facebook Live chat tomorrow at 12:30 EST which will cover the latest research, drug repurposing and recent clinical trial findings. The discussion panel will include Prof Patrik Brundin (Van Andel Institute), Prof Tom Foltynie (University College London – lead investigator of the Exenatide clinical study), Dr. Richard Wyse (Director of research at the Cure Parkinson’s Trust) and Jillian Carson (PD patient advocate, physiotherapist and co-founder of ParkinGo). It should be a very interesting discussion – click here to find out more (requires a Facebook account).

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24th September – Questions and Answers

For those of you who are not aware of PD365, you really should watch this Youtube channel run by Emma Lawton (if only for her father’s occasional hilarious cameos!). It is a brave and informative view of life with Young-onset Parkinson’s disease. And Emma has decided to add an interesting new feature:


18th September – Also beautiful


15th September – Beautiful


12th September – Tom Isaacs

An amazing night tonight was had by the Parkinson’s community in London. Folks came from as far away as New Zealand to pay tribute to an amazing man: Tom Isaacs.

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The event was held by the Cure Parkinson’s Trust (of which Tom was a co-founder) at the Merchant Taylors’ Hall. It was a fantastic event – a worthy tribute to an amazing man.

 

 

 

 

 

 

 

 

 

 

 

 

And on a personal note, it was wonderful to be able to meet and chat with so many people there.


9th September – Anniversary

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Two years ago today, the SoPD website kicked off with a post looking at new research on the gut in Parkinson’s disease (Click here to read that post). What an amazing period of time has passed since then.


6th September – BREXIT

I don’t usually like to get political or to give opinions on this site, but this issue hits pretty close to home. Yesterday a document was leaked from no. 10 Downing street apparently. It could just be political theatre or indicative of the divided forces in power at the moment, but the implications are massive – not just for UK research, but also yours truly.

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Immigration is a major issue for UK research – the funding of research is secondary. Just under 20% of researchers in the UK come from the EU. In Cambridge, my guess is that this number is a lot higher. The institute I work in is definitely over 30%, and one lab is 80%. But if an expensive and prolonged visa process is installed with limitations attached, is this intellectual talent going to shrink? Why should an Austrian researcher come to the UK if they can do the same research in Germany, Sweden or Italy without the bureaucratic hassle?

On a more personal note, I am only allowed to stay in the UK on my EU wife’s passport (EEA family member certificate). Having paid taxes for over 10 years, we are seriously wondering what to do. ‘Just get a UK passport’ people say. But those individuals don’t realise that EVERYONE in the UK will require new passports (and drivers licence!), and I would rather wait till we have some clarity before going through the expensive process.


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