Travelling to DRIG events can be …

The following experience happened to a participant (Anonymous) of the first event in 2019. Thanks for letting us know what additional obstacles had to be dealt with by a person with Parkinson’s.

For the recent meeting of DRIG in Dundee I chose to travel by train from Glasgow; a journey of about 90 minutes, followed, as this was my first visit, by a short taxi ride to the Life Sciences Building.


You might wonder why bother to write about the journey. Read on !!


Uniquely the Life Sciences building has a killer front door which slams shut at 1700, by which time visitors must be out. The station is a shortish walk away and all downhill. I arrived to find a train for Glasgow, where I was going to spend the night anyway, due. So down the escalator I went to the platform, looked up, to check the platform number and came to an abrupt stop. It was now due in an hour, underneath it was stated that the next trains to both EDINBURGH AND GLASGOW were subject to delay due to problems in the trains ahead. By this time the board had flipped back – very briefly – to the initial comment.


It was about an hour before the platform had a train on No 4 for Edinburgh and on No 2 for Glasgow. The only change to our route was to be a stop at Stirling.


One had had enough time to learn from a friendly inspector about the three levels of service up these parts – LNER, VIRGIN and – SCOTTISH; also that the tickets were interchangeable in situations like this. It looked unlikely however that HE who was being assisted would get a free taxi from Wigan to the Manchester soccer he wished to watch, if they arrived after 0100 hrs. Anyway we were now on our way and without further crises arrived in Glasgow as it started to snow and – I had a bed waiting. What planning!!


Next day I took my time. A mistake. Reaching Queen St about midday I descended to the lower level platform to find the Helensburgh train indicated 2nd, to arrive in about 10 minutes. After about 4 minutes it was cancelled, the reason given was mechanical between Haymarket and Bathgate. That meant a 30 minute wait on a cold and drafty platform.

Oh well, I had had some breakfast and felt I could cope. Always a Parkinson No-no.


However ABELLO** beat me to it. I didn’t hear the Eastside loudspeaker, every train seems to go to Edinburgh anyway. Passengers on it were now all getting off. Then they told our side that ALL trains had been stopped. An official had also appeared on our platform but he ended his comment with the phrase “I don’t have to tell you any more.” Clearly this was no time for witticisms. He suggested that the best thing to do was to go over to Central and take the low level from there. IN CASES LIKE THIS THEY GET GOING QUICKER.


But that was not the end of it. The Doctor had to have the last word. The day was cold, there was frustration, not much had been drunk, and one had waited maybe 30 minutes. Only one thing loomed. “I don’t have to tell you any more.” BUT YOU ARE IN THE TRADE YOU SAY.


So with facial muscle fixed upon the hide we steal no sign of panic looms
As double coat hides all the kit the stream flows fast and safe an’ peace reflects all’s dry.


So the walk to Central commences. It’s bitter cold. The people movers are neatly stacked but unattended and down below it’s warmer. Any train west goes to Partick where it is even warmer and a train to Helensburgh properly placed in the daily schedule eventually comes. It’s a three carriage and it leaves stuffed full.


But the line manager has the last word. Arriving at Dumbarton central the driver comes on the loud speaker to state that the train will terminate at the next station Dalreoch.


This guy must know that the 1b bus will be through to Dalreoch about the time the train arrives and that while many have got off at Dumbarton the bus will probably manage the rest for cardross to Helensburgh the terminus. Here we can catch local busses to the house after another short wait.


** Unfortunately this train just about to arrive at Queen street hit a person on the line between Bellgrove and High St. resulting in a general cancellation of all trains on this track.

Report: DRIG’s first event in 2019

The first event in 2019 was a guided tour through the PPU Lab at the University of Dundee.

Dr. Esther Sammler, member of DRIG’s Steering Committee and a renowned researcher, published the report on this event.

Report on the visit to the MRC PPU lab.

Public Part of the 2nd Dundee-Edinburgh Research Initiative Meeting

The Dundee-Edinburgh Research Initiative brings top research at both locations together. Once a year this exciting work is presented at an outstanding event. Its scientific part is intended for researchers but the public part aims to give an understanding of the ongoing research to everyone with interest in Parkinson’s.

To achieve this, we planned a panel discussion around themes that become relevant during the course of the illness.

To book a place and for further details please visit here.

Autumn 2019 Event

The next Autumn Event’s topic will be decided by you – the participants. We selected five subjects, that were of particular interest to many of us:

The impact of

  • Exercise
  • the Gut or
  • Nutrition on Parkinson’s as well as
  • Parkinson’s and pain and
  • Parkinson’s and sleep.

We would like you to select the topic(s) of your choice (voting will start in April 2019) and we will create a programme that reflects your priorities.

 

Visit the MRC PPU Lab …

… and experience world class research.

In order to develop a cure for Parkinson’s disease or at least to slow down or stop its progression, it is necessary to know the mechanisms leading to Parkinson’s disease. Over the last few years, the MRC PPU Laboratory at the University of Dundee under the direction of Prof. Alessi has contributed significantly to the identification of such mechanisms. In this laboratory, the roles of various genes, the best known being LLRK2 and PINK1, were found on the outbreak of the disease. These findings are not only of a theoretical nature but also form the basis for the development of novel drugs and thus nourish the hope of the affected patients.

This work was presented by Prof. Alessi, Prof. Muqit and Dr. Sammler at a DRIG (Dundee Research Interest Group) event in May 2018. DRIG now offers all interested persons the opportunity to visit the laboratory, to experience research up close and to get to know the researchers who pursue only one goal with great enthusiasm: Parkinsons must become curable!

The lab visit will take place on

18th Jan. 2019; 14:00 – 17:00

It will start with an introduction by Prof. Alessi before the guided tour through the lab in small groups. There will be several stops – posters and information – en route where researchers present their work in their working environment. There will be enough time to interact with the researchers and ask questions. There will be a session for individual talks with the researchers after the guided tour, befor a Q&A session will conclude the programme.

We scheduled this event during working hours and therefore need to limit the number of participants to 40; thus

registration is necessary 

to participate. There will even be no admission to the building without ticket. So get your ticket today.

Spring 2018 Conference – Downloads

Slidesets:

DRIG information

written by Marc van Grieken

 

The RSN – a UK wide Research Support Network

The Research Support Network within Parkinson’s UK brings together people driven to help find a cure and better treatments for Parkinson’s. People join the Research Support Network to learn more about ongoing and new research, and also have potential opportunities to participate in and help shape Parkinson’s research.

The key role of the Research Support Network is to:

  • Increase awareness and understanding of research
  • Encourage participation in research
  • Encourage and support patient and public involvement in shaping research

Dundee Research Interest Group

The Dundee Research Interest Group was established on the 25th January 2018 following two meetings with a range of people with an active interest in Parkinson’s research.

The role of the group is to establish a wider-reaching local activity base for the Research Support Network.

DRIG has a steering group responsible for overall program and direction of the group and an executive group responsible for implementing the program set by the steering group. This might include helping to organise activities and events more locally. They will have close links to their local Area Development Managers (ADM), Volunteer Coordinators (VC), and the newly formed Local Development Teams (LDT).

AIMS of DRIG

The preparation meetings confirmed themes for DRIG revolving around ‘communication’,  ‘providing information and raising understanding’ and ‘participation’.

Communication:
  • Raising the profile of Parkinson’s research – for example by means of a website, facebook page
  • Raising awareness of Parkinson’s (sharing experience by those affected by Parkinsons)
  • Providing a forum that enables discussion
Provide information and raise understanding and to learn more about:
  • Parkinson’s  – how to manage the symptoms, dystonia, sleep loss, etc?
  • how the gut affects Parkinson’s, how it affects the brain, how diet affects the gut, etc?
  • why Parkinson’s is so different from one person to the next?
  • Medication & Treatments – now and in the future, new drugs, new treatments, generic drugs, etc
  • Research – what can and can’t be done, the limitations of money, etc
Participation
  • To find out more about clinical trials and how to participate.
  • How can we help?
  • Helping researchers to shape research – collaborative research projects

Steering Group Membership

  • The Steering Group comprises of people with Parkinson’s (PwP) or family members and professionals who will decide, amend or add plans for the group for each year.
  • The Steering Group meets at least every six months.
  • Each Group member will be recognised as a volunteer with the Parkinson’s UK Research Team so that support for their role is ensured from the RSN Manager and the Parkinson’s UK Volunteering team. The tenure is ideally for a minimum of 2 years but of course dependent on the interest of each member.
  • The Steering Group meetings will be open for new people to attend if interested in joining the group.
  • The Steering Group will arrange annual or smaller regular events or open meetings, where larger numbers of people can attend to hear about the group’s activities and also hear from local researchers about their work.

Support and Communication

  • The Steering Group will be supported by the RSN Manager, the Volunteering Team and their local Area Development Manager.
  • The Steering Group will be responsible for setting annual plans and agreeing time-frames for achieving them. These should be reviewed frequently to ensure that momentum is being maintained, objectives are being met and new ideas are explored. Also planned feedback, impact, evaluation will be arranged with the RSN Manager and ADM to establish a clear picture of what is going well or what may need amending.
  • The RSN Manager will be updated with progress from the Steering Group and shall give feedback, advice and assistance where appropriate.
The ADM will also signpost:
  • people who are interested in research to the Research Interest Group.
  • Steering Group members to local contacts and services that are relevant to the plans for the year.
  • DRIG may decide to produce a newsletter and has already established a website: www.drig.org.uk  to raise awareness of the group and promote their activities and to provide information.

DRIG Steering Group

  • The Steering Group will meet quarterly in Dundee at the MRC PPUU, or at the Improvement Academy at Ninewells Hospital.
Current Steering Group
  • Marc van Grieken
  • Sue Harley
  • Chloe Macmillan
  • John Minhinick
  • Werner Remmele
  • Dorothy Roth
  • Michael Roth
  • Esther Sammler

and an executive group currently made up of:

  • Chairman: Marc van Grieken
  • Secretary: Werner Remmele
  • Events manager: vacant

The role of the executive group is to prepare for the Steering Group and to implement the decisions of the Steering Group.

Event Planning
  • DRIG may decide to host Research Events so that local people can hear from Parkinson’s researchers about their work and this is indeed the topic of our first event: Unveiling some of the mechanisms that trigger Parkinson’s.  We have prepared this event in collaboration with the MRC PPUU.
Other plans include:
  • a visit to the MRC PPUU lab
  • Planning and organising research talks or events to local branches of Parkinson’s UK

Short Report on DRIG’s Spring Conference 2018

By Marc van Grieken, DRIG Chairman

 

On Tuesday 26th June, the recently established Dundee Research Interest Group (DRIG) held its first public event: a conference with the title ‘Unveiling some of the Mechanisms which trigger Parkinson’s’.

The event was attended by approximately 80 people either directly, by having Parkinson’s or indirectly (as family member or carer) affected by Parkinson’s and addressed by 5 speakers and 5 PhD Students and postdoctorial researchers.

Prof Ken Bowler introduced the history and successes of the Edinburgh Research Interest Group which was the first one to be set up in the UK and his talk was followed by Marc van Grieken who gave a brief personal account of his diagnosis and the years following this.

The main part of the event however comprised three in depth presentations:

Firstly by Prof Dario Alessi who explained the discovery of specific pathways and mutated genes (LRRK2) that trigger Parkinson’s and by identifying these pathways open up the opportunity to ‘block’ or inhibit the effect of these.

He was followed by Dr Esther Sammler who is both a clinical neurologist consultant but also researches at Dario Alessi’s MRC unit concentrating on inhibiting the mutated gene and who is about to commence on sampling a test the researchers have developed

The final talk was by Dr Mitatul Muqit who studies two further genes PINK1 and Parkin and is setting out a framework for clinicians to increase and translate knowledge and understanding leading to better treatments.

The talks were followed by Q&A sessions and there was also time to talk on an individual basis to the researchers and students.

First DRIG event

The first DRIG event took place on June 26th 2018.

About 80 participants were offered a programme ranging from basic research to trial application to the patient. The scientific program was rounded off by a lecture from a very personal perspective by Parkinson patients, a time-lapse journey through the history of the Research Interest Groups and by young scientists who presented their work with great commitment and discussed it with the participants.

A big thank you to everyone contributing to this event and making it a successful start for DRIG.

Some impressions of the event.

Interaction Sessions

This session is intended to start the communication between the Parkinson’s professionals and patients. Patients should get to know what they can expect and professionals should get to know the needs of the patients first hand.

Available researchers, scientists, professionals and Parkinson’s UK representatives:

Professionals, Researchers, DRIG Officials

Occupation

Description – Statement

Speakers

Prof. Dario Alessi Professor of Signal Transduction and Director of MRC Protein Phosphorylation and Ubiquitylation Unit (MRC-PPU) and the Division of Signal Transduction Therapy Unit (DSTT) I believe that it is not unrealistic that with continued and expanded research efforts, major strides towards better treating Parkinson’s disease can be made in the coming years. Patient’s support and involvement in research is vital for success!
Dr. Esther Sammler Postdoctoral Researcher and Honorary Senior Clinical Lecturer My specialist clinical interests are movement disorders, in particular Parkinson’s disease and related Parkinsonian syndromes as well as neurogenetics. I chair the Tayside Parkinson’s forum.
Dr. Miratul Muqit Wellcome Trust Senior Research Fellowship in Clinical Science and Programme Leader My laboratory focuses on elucidating signal transduction pathways that are linked to neurodegeneration in Parkinson’s disease … This will undoubtedly drive new ideas into how to better diagnose and treat this devastating condition.

Researchers

Dr. Sophie Burel Postdoctoral researcher with Dario Alessi, Miratul Muqit, MRC-PPU Using patients derived samples to study LRRK2 and PINK1, two proteins whose function is altered in Parkinson’s disease, which will hopefullly increase our knowledge about the mechanisms involved in the development of the disease, and might help to improve diagnosis and treatment.
Elena Purlyte PhD student with Dario Alessi, MRC-PPU I am looking for interactors of the Parkinson’s disease associated kinase LRRK2 – it is important work necessary to establish how LRRK2 acts in the cell and identify new potential drug targets.
Dr. Andy Howden Postdoctoral researcher with professor Doreen Cantrell, Cell Signalling and Immunology, SLS Dundee Understanding the link between the immune system and Parkinson’s disease.
Theresita Joseph 4th year medical student from University College London, MSc Research student with Dario Alessi Working on Masters to pursue clinical and research interests in Parkinson’s.
Dr. Valentina Ferlito Brainwave Discovery Ltd., Parkure Ltd., The University of Edinburgh CrowdLabbing: Learn how to participate in laboratory research to find new treatments for Parkinson’s and to become a citizen scientist.

Parkinson’s Specialist

Catherine Young Parkinson’s Nurse, Dundee Role of a Parkinson’s Nurse

Parkinson’s UK

John Minhinick Chairman Parkinson’s UK Fife Branch, Member of DRIG Steering Committee Offerings of the Fife Branch
Billy Webster Chairman Parkinson’s UK Dundee Branch, Member of DRIG Steering Committee Offerings of the Dundee Branch
Mary Elmers Parkinson’s UK, Service Improvement Adviser Parkinson’s Excellence Network and Parkinson’s Voices
Chloe Macmillan Parkinson’s UK, Area Development Manager Information & Support services available from Parkinson’s UK
Liz Nash Parkinson’s UK, Research Support Network Manager Research Support Network and Research participation opportunities

DRIG

Marc van Grieken Chairman DRIG Goals and future offerings from DRIG
Werner Remmele Secretary DRIG Goals and future offerings from DRIG