Due to the positive feedback that we have receieved from our symposium blog, we have decided to start blogging about what we get up to in the research development team as well as what is going on in the world of MND research.
We hope you enjoy reading our new blog!
Please follow us at mndresearch.wordpress.com.
Wednesday, 14 April 2010
Monday, 21 December 2009
Feedback
We would really appreciate your feedback as to whether you found this blog useful and whether you would like us to continue blogging –this time about the MND Association research development team’s activities and the latest advances in research as and when they happen.
If you are interested in giving us your feedback then please leave us a comment by clicking on the ‘comment’ blue link at the bottom of this entry. Alternatively, you can email us at research@mndassociation.org with your comments if you would not like them to be published on this webpage.
Thank you very much!
If you are interested in giving us your feedback then please leave us a comment by clicking on the ‘comment’ blue link at the bottom of this entry. Alternatively, you can email us at research@mndassociation.org with your comments if you would not like them to be published on this webpage.
Thank you very much!
Friday, 11 December 2009
The closing session and final thoughts
Dr Meyer, who summarised the clinical sessions said that this year, he has seen a trend in the evidence for symptomatic treatment and care; an improvement of palliative care; progress in clinical trials and trial management; an integration of IT in trials, patient management and home care as well as the empowerment of patients and their families.
The second speaker, who summarised the scientific sessions, was Dr Van den Bosch who said that it is exciting times for MND research. Fifteen years ago, we learnt about a mistake (mutation) in a gene called SOD1 that causes 20% of the inherited, familial form of MND (that accounts for 10% of all cases). A few years later, we then developed the first and only treatment for MND – riluzole. In the past two years, we have learnt about two new causes of inherited MND – TDP-43 and FUS gene mutations. During the symposium we have also learnt more about the role that genes play in MND as well as the development of a number of new and exciting models. We are also learning more about the causes and are constantly adding to our current knowledge.
It is only through sharing this knowledge and collaborating internationally that we can find a new treatment for MND and improve care and quality of life for all who are living with the disease.
After the talks concluded, researchers, clinicians and health and social care professionals said their final goodbyes to old and new acquaintances as they left the auditorium for the last time.
On a personal note, I would like to thank Kevin Thomas and Chris Lynch for giving up their ‘spare’ time during the symposium to tell me about their highlights and insights – they were both extremely helpful and enthusiastic throughout the whole event.I hope that you have enjoyed reading my blog and now have a true sense of what the symposium is all about.
It is only through sharing this knowledge and collaborating internationally that we can find a new treatment for MND and improve care and quality of life for all who are living with the disease.
After the talks concluded, researchers, clinicians and health and social care professionals said their final goodbyes to old and new acquaintances as they left the auditorium for the last time.
On a personal note, I would like to thank Kevin Thomas and Chris Lynch for giving up their ‘spare’ time during the symposium to tell me about their highlights and insights – they were both extremely helpful and enthusiastic throughout the whole event.I hope that you have enjoyed reading my blog and now have a true sense of what the symposium is all about.
The symposium is not ‘just’ about the presentations given. It’s more than that. It’s about meeting people with a similar research interest to forge a new collaboration. It’s about coming together from across the world. It’s about asking questions and debating ideas to push research forwards to a new level. This is why we organise the symposium every year and we are extremely proud to say that this year has been successful.
Motor neurone biology
Not only do we learn about the advances in MND research at the symposium but we also have an opportunity to learn more about how our motor neurones grow and develop as well as how they normally function.
We first heard from Dr Briscoe about the creation of motor neurones in our body, and specifically, the role and importance of a protein called sonic hedgehog - I kid you not. He explained that sonic hedgehog is integral to the formation of different types of nerve from easily influenced cells – ie they can turn into a variety of different types of nerve (including motor neurones) if given the right cues. However, in order to create a motor neurone, a specific level of sonic hedgehog as well as the right amount of time is needed. This information is important to be able to create motor neurones derived from stem cells to create new models for MND.
The second talk given by Dr Lemon demonstrated that humans have a higher level of dexterity and therefore, may have a higher need to maintain the function of the motor neurones than other animals. He also went on to suggest that as other animals, such as rodents, do not have as refined motor neurone control as humans then we must be aware of this limitation when using animal models of MND. This posed a lot of debate amongst delegates.
We first heard from Dr Briscoe about the creation of motor neurones in our body, and specifically, the role and importance of a protein called sonic hedgehog - I kid you not. He explained that sonic hedgehog is integral to the formation of different types of nerve from easily influenced cells – ie they can turn into a variety of different types of nerve (including motor neurones) if given the right cues. However, in order to create a motor neurone, a specific level of sonic hedgehog as well as the right amount of time is needed. This information is important to be able to create motor neurones derived from stem cells to create new models for MND.
The second talk given by Dr Lemon demonstrated that humans have a higher level of dexterity and therefore, may have a higher need to maintain the function of the motor neurones than other animals. He also went on to suggest that as other animals, such as rodents, do not have as refined motor neurone control as humans then we must be aware of this limitation when using animal models of MND. This posed a lot of debate amongst delegates.
International perspectives on care management
This session was dedicated to sharing ideas and progress into care management from across the world. As you may already know, thoughts and attitudes towards care varies from country to country due to political and cultural differences. Both Kevin and Chris found that every talk given in this session gave something new to think about. Although there are differences internationally, there are also similarities that link and overlap demonstrating that we are on the right path to manage care effectively.
Kevin and Chris found this session enjoyable and the room was packed with delegates eager to hear the session! What stood out for them was a talk given by Dr Goldman where he spoke about a training session that he has set up in Switzerland for people with MND, caregivers and health and social care professionals to provide them with hands on practical advice for caring. After the training was complete most people involved stated that they had an increased knowledge of care giving which now provides food for thought for many delegates.
Whilst I was speaking with Kevin and Chris about the sessions that they attended, we were unexpectedly joined by Dee Norris, advisory director of the Forbes Norris Foundation in America who lent us her thoughts. She commented that on a number of occasions people with MND have told her that “nobody is doing anything” but wanted to reassure people that there are a lot of people doing a lot of things. Researchers, clinicians and health and social care professionals are working on improving quality of life by many means. It is only by coming together at the symposium and sharing information that we will drive research and knowledge forwards.
Kevin and Chris found this session enjoyable and the room was packed with delegates eager to hear the session! What stood out for them was a talk given by Dr Goldman where he spoke about a training session that he has set up in Switzerland for people with MND, caregivers and health and social care professionals to provide them with hands on practical advice for caring. After the training was complete most people involved stated that they had an increased knowledge of care giving which now provides food for thought for many delegates.
Whilst I was speaking with Kevin and Chris about the sessions that they attended, we were unexpectedly joined by Dee Norris, advisory director of the Forbes Norris Foundation in America who lent us her thoughts. She commented that on a number of occasions people with MND have told her that “nobody is doing anything” but wanted to reassure people that there are a lot of people doing a lot of things. Researchers, clinicians and health and social care professionals are working on improving quality of life by many means. It is only by coming together at the symposium and sharing information that we will drive research and knowledge forwards.
Exercise, metabolism and nutrition
Unlike other sessions, this one began with a debate on the role that exercise plays in MND with one person arguing for and the other against. Both Kevin and Chris found that this format was enlightening as both speakers were able to use the same evidence but for opposite purposes. This demonstrated that if you look hard enough for evidence to prove your original thoughts (your hypothesis) then you will find it. This means that the evidence can be interpreted in many ways, but it is only through discussion and debate that we can try to learn which is true and whether exercise really does play a role in MND.
Thursday, 10 December 2009
Emerging Diseaes Models
Models of disease allow researchers to study MND on a level that would otherwise be impossible. As our motor neurones can be as long as one metre in practically every area of our body, it is not possible for researchers to find the causes of the disease, or develop future therapies without using models. This session therefore discussed new models that may be used to find causes and develop future treatments for MND.
The first talk was given by an eminent MND stem cell researcher called Prof Chris Henderson who has been developing a new ‘in a dish’ human motor neurone model for MND. These motor neurones were derived from skin cells using an intermediate stem cell-like cell called an ‘induced pleuripotent stem cell’ – or iPS cells for short. This is a truly exciting prospect to have a human motor neurone model, as studying the progression of MND in a human motor neurone can be directly related to what causes the disease in people. This model will also allow researchers to test future therapies to speed up the process of finding a new treatment for MND. Prof Henderson sees this research as having two potential aims, the first being to better understand what goes wrong in MND on a cellular level and the second being the potential to use this new technology to replace damaged motor neurones. However, although the latter is an exciting prospect, the road ahead is paved with many hurdles that we simply do not know how to overcome yet. So for now, Prof Henderson said that his team will focus on finding the answers to the first question which will help us to better understand the causes of MND.
We also heard talks on the development of the zebrafish model for MND. Amazingly, we are actually quite similar to the zebrafish in terms of our motor neurone system which allows researchers to study MND in this model.
Lastly, we heard about the development of the chick as a “functional model” of MND. This means that they are not researching the progression of MND in a chick but that they are looking for the effects that taking out particular proteins in the chick (such as TDP-43) has on its early development inside the eggshell.
Studies such as these will lead us to learn more about what goes wrong in our motor neurones when MND develops and if we can identify the causes by using rigorous models then we will be able to develop new treatments for MND.
The first talk was given by an eminent MND stem cell researcher called Prof Chris Henderson who has been developing a new ‘in a dish’ human motor neurone model for MND. These motor neurones were derived from skin cells using an intermediate stem cell-like cell called an ‘induced pleuripotent stem cell’ – or iPS cells for short. This is a truly exciting prospect to have a human motor neurone model, as studying the progression of MND in a human motor neurone can be directly related to what causes the disease in people. This model will also allow researchers to test future therapies to speed up the process of finding a new treatment for MND. Prof Henderson sees this research as having two potential aims, the first being to better understand what goes wrong in MND on a cellular level and the second being the potential to use this new technology to replace damaged motor neurones. However, although the latter is an exciting prospect, the road ahead is paved with many hurdles that we simply do not know how to overcome yet. So for now, Prof Henderson said that his team will focus on finding the answers to the first question which will help us to better understand the causes of MND.
We also heard talks on the development of the zebrafish model for MND. Amazingly, we are actually quite similar to the zebrafish in terms of our motor neurone system which allows researchers to study MND in this model.
Lastly, we heard about the development of the chick as a “functional model” of MND. This means that they are not researching the progression of MND in a chick but that they are looking for the effects that taking out particular proteins in the chick (such as TDP-43) has on its early development inside the eggshell.
Studies such as these will lead us to learn more about what goes wrong in our motor neurones when MND develops and if we can identify the causes by using rigorous models then we will be able to develop new treatments for MND.
Clinical phenotypes and disease progression
Kevin (pictured right with me writing this blog) found this session interesting as he found that it wasn’t ‘simply’ about the presentations given. He says that a lot of questions were posed to presenters that challenged their work and provoked further thought for all who attended the session.
It is important for us all to bear in mind that the symposium is not just a platform for researchers to present their work and it to be taken as true. Challenging ideas and asking new, unanswered questions is a way to move research forward. There were certainly lots of questions that were posed in this session leaving much food for thought. Certainly the presenters and the delegates have left the session realising that there is more work to be done. This is the point of the symposium.
Spiritual care and meaning in life
Spirituality is not just defined by religion. It is about how you determine your meaning in life which incorporates your own unique feelings and beliefs whatever they may be. Dr Oliver, who chaired this session, said that this is the first time that spiritual care has been on the billing which demonstrates its acceptance and rightful place to be discussed and debated amongst delegates.
Kevin and Chris (two of our RCDA’s who are helping me to report on the symposium) pointed out that this is now not considered a “woolly” subject as there is clinical evidence that suggests the importance of clinicians and health and social care professionals to be aware of a person’s own, unique spiritual needs. The session went on to discuss that this should involve asking the patient a series of questions during their initial assessment to determine what the person’s inner needs and wants are.
What struck Kevin and Chris was the statement that the loss of meaning in life is one of the main determinants for a person requesting to end their life. It is therefore important that clinicians and health and social care professionals appreciate a person’s spirituality when helping to improve their quality of life.
Kevin and Chris (two of our RCDA’s who are helping me to report on the symposium) pointed out that this is now not considered a “woolly” subject as there is clinical evidence that suggests the importance of clinicians and health and social care professionals to be aware of a person’s own, unique spiritual needs. The session went on to discuss that this should involve asking the patient a series of questions during their initial assessment to determine what the person’s inner needs and wants are.
What struck Kevin and Chris was the statement that the loss of meaning in life is one of the main determinants for a person requesting to end their life. It is therefore important that clinicians and health and social care professionals appreciate a person’s spirituality when helping to improve their quality of life.
Wednesday, 9 December 2009
Clinical trials and trial design
Current and recent clinical trials are presented in this session which includes their results and an explanation of the methods that they used to conduct the trial as well as the methods used to analyse the results. It is important to share this information so that future trials can be designed to be better and more robust.
The highlight of this session was the results found from a recent Phase 2 clinical trial of a drug called KNS-760704, developed by a pharmaceutical company called Knopp Neurosciences Inc.
The two-part Phase 2 trial found that KNS-760704 was safe and well-tolerated in people with ALS (the most common form of MND) when taken for up to nine months. This means that the trial drug was tested in people with ALS for nine months and therefore the continued safety of this drug will need to be studied in future clinical trials. The trial results also showed trends suggesting the potential for reducing the rate of decline in the functional capability of patients, for example, how far people can walk unaided, lifting objects, dexterity in eating; and survival. They are now planning a larger Phase 3 clinical trial to test the effectiveness of the drug in people with ALS.
We have issued a press release regarding this clinical trial so for more information, please visit: http://www.mndassociation.org/news_and_events/our_news/kns760704.html
The highlight of this session was the results found from a recent Phase 2 clinical trial of a drug called KNS-760704, developed by a pharmaceutical company called Knopp Neurosciences Inc.
The two-part Phase 2 trial found that KNS-760704 was safe and well-tolerated in people with ALS (the most common form of MND) when taken for up to nine months. This means that the trial drug was tested in people with ALS for nine months and therefore the continued safety of this drug will need to be studied in future clinical trials. The trial results also showed trends suggesting the potential for reducing the rate of decline in the functional capability of patients, for example, how far people can walk unaided, lifting objects, dexterity in eating; and survival. They are now planning a larger Phase 3 clinical trial to test the effectiveness of the drug in people with ALS.
We have issued a press release regarding this clinical trial so for more information, please visit: http://www.mndassociation.org/news_and_events/our_news/kns760704.html
Poster Session
The poster session always begins on the second day of the symposium at 8.30 in the morning and delegates soon start to arrive and mill around. By the time the poster session is in full swing, this casual milling soon turns into a swarm. Throughout the auditorium, delegates can be found clutching their abstract books, eagerly reading and annotating them. A low toned murmur of hundreds of people discussing their work with their peers creates an outstanding atmosphere along with the tell-tale sound of Velcro still echoing around the auditorium as delegates dip into their bags to find their trusted abstract book.
Sharon feels that it is important to present her work at this year’s symposium to raise awareness of the new literature that the MND Association has developed for children that are affected by MND. She says that it’s only natural for adults to feel that they must nurture and protect their children as they may feel that telling a child about MND would be too distressful. However, there’s evidence to suggest that when children are shielded from this information then this makes them more anxious – this also reiterates what Baroness Finlay mentioned in her opening speech.
Tuesday, 8 December 2009
Functional Genomics
Our genetic code holds the instructions for building everything in our body, from determining your eye colour to the intrinsic details of how waste is taken out of a cell. Each gene holds the instructions for building a specific protein in our body which have particular functions, such as transporting cargo from one side of the motor neurone to the other. However, if the gene holds a mistake (mutation) or spelling difference (variation) then this could have an effect on the capability of the protein to fulfil its regular function. This session is therefore devoted to informing us what functions may become faulty in MND due to mistakes or spelling differences in the genetic code.
In this session, we were told of a new advance that was published in a journal last night! Prof Julien discussed that his research group have found a genetic spelling mistake in both people with the randomly occurring, sporadic form as well as the inherited, familial form of MND. This spelling mistake appears to bring forward the age at which a person first experiences symptoms of MND by almost a decade. The variation also increases the overall risk of somebody developing the disease. As we feel that this is quite an important finding, we have written a news in research article on this finding so for more information on this please visit:
http://www.mndassociation.org/research/news_in_research/gene_variation_leads.html
In this session, we were told of a new advance that was published in a journal last night! Prof Julien discussed that his research group have found a genetic spelling mistake in both people with the randomly occurring, sporadic form as well as the inherited, familial form of MND. This spelling mistake appears to bring forward the age at which a person first experiences symptoms of MND by almost a decade. The variation also increases the overall risk of somebody developing the disease. As we feel that this is quite an important finding, we have written a news in research article on this finding so for more information on this please visit:
http://www.mndassociation.org/research/news_in_research/gene_variation_leads.html
Proteinopathies
This session was dedicated to finding out more information on how proteins (which perform specific functions, such as transporting cargo from one place in a motor neurone to the other within the body) can cause MND.
The major highlight of this session was learning that the clumping (aggregation) of faulty proteins in the motor neurones of people with MND is also found in many other neurodegenerative diseases such as Alzheimer’s disease and Fronto-Temporal Dementia (FTD). This suggests that there is a common mechanism in the aggregation of faulty proteins in these diseases.
Two previously identified protein aggregates that may cause MND are called FUS and TDP-43. Interestingly, the build up of these specific faulty proteins is also found in FTD – this suggests that these two diseases are part of the same spectrum. This is also reiterated in that it is thought that 10-15% of people with MND will also be diagnosed with FTD (either before or after the diagnosis of MND). There is also evidence to suggest that up to 50% of people with MND will also have some degree of cognitive change through the progression of MND.
However, it is still important to determine why these proteins are becoming faulty and aggregating in motor neurones and what the exact disease causing mechanism is. The current feeling, said Prof Neumann, is that MND could either be caused (or contributed to) by either the loss of function of these proteins from the control centre of the cell (the nucleus) or by a toxic effect from the proteins not being able to transport themselves back to the control centre. Whether the true answer is one of these, something completely different, or indeed both is still to be determined.
If we can learn more about how proteins such as FUS and TDP-43 play a role in the development of MND, we will be able to identify suitable therapeutic targets so that future therapies can be developed with the hope of a new treatment for MND.
The major highlight of this session was learning that the clumping (aggregation) of faulty proteins in the motor neurones of people with MND is also found in many other neurodegenerative diseases such as Alzheimer’s disease and Fronto-Temporal Dementia (FTD). This suggests that there is a common mechanism in the aggregation of faulty proteins in these diseases.
Two previously identified protein aggregates that may cause MND are called FUS and TDP-43. Interestingly, the build up of these specific faulty proteins is also found in FTD – this suggests that these two diseases are part of the same spectrum. This is also reiterated in that it is thought that 10-15% of people with MND will also be diagnosed with FTD (either before or after the diagnosis of MND). There is also evidence to suggest that up to 50% of people with MND will also have some degree of cognitive change through the progression of MND.
However, it is still important to determine why these proteins are becoming faulty and aggregating in motor neurones and what the exact disease causing mechanism is. The current feeling, said Prof Neumann, is that MND could either be caused (or contributed to) by either the loss of function of these proteins from the control centre of the cell (the nucleus) or by a toxic effect from the proteins not being able to transport themselves back to the control centre. Whether the true answer is one of these, something completely different, or indeed both is still to be determined.
If we can learn more about how proteins such as FUS and TDP-43 play a role in the development of MND, we will be able to identify suitable therapeutic targets so that future therapies can be developed with the hope of a new treatment for MND.
Translating evidence into practice
The overarching theme of this session was that there is now a broader use of evidence-based practice in clinics, and for treatments whilst we wait for an effective treatment for MND.
Kevin was pleased to find that discussions involving multidisciplinary care are more prominent at this symposium in relation to past symposia. He then reflected that this may be a sign that clinicians are accepting that they must work with other teams to increase the care and quality of life for people living with MND. Even though the use of a multidisciplinary team may seem to be obvious (in that there is a need), the reiteration of this and acknowledgement of its necessity is paramount.
Chris then said that it was reassuring to find that there are similar issues concerning multidisciplinary teams and support for carers from a number of different countries dispite cultural differences. She will be using this evidence and her experiences that she has learnt from this session to influence clinicians to refer people with MND to a multidisciplinary team – the evidence being that it can increase the care received and quality of life of somebody with MND.
Both Chris and Kevin also found that the talks on end of life care and support useful as they focused on a key concept that care and support should focus on what the person with MND wants as well as what their family think and support.
Further to this, Kevin found a talk given by Dr Simmons extremely useful as he stated that: Clinicians need to give clear, jargon free information on the access to equipment, emotional support and the condition itself in a timely way whilst also ensuring that these key messages are repeated on a regular basis. This talk reiterated Kevin’s previous feelings that there is an information overload to carers that needs to be addressed.
Overall, both Kevin and Chris felt that it was extremely reassuring that their efforts to acheive best practice in the UK by influencing clinicians that the use of multidisciplinary teams is needed now has evidence that suggests its effectiveness and necessity.
Kevin was pleased to find that discussions involving multidisciplinary care are more prominent at this symposium in relation to past symposia. He then reflected that this may be a sign that clinicians are accepting that they must work with other teams to increase the care and quality of life for people living with MND. Even though the use of a multidisciplinary team may seem to be obvious (in that there is a need), the reiteration of this and acknowledgement of its necessity is paramount.
Chris then said that it was reassuring to find that there are similar issues concerning multidisciplinary teams and support for carers from a number of different countries dispite cultural differences. She will be using this evidence and her experiences that she has learnt from this session to influence clinicians to refer people with MND to a multidisciplinary team – the evidence being that it can increase the care received and quality of life of somebody with MND.
Both Chris and Kevin also found that the talks on end of life care and support useful as they focused on a key concept that care and support should focus on what the person with MND wants as well as what their family think and support.
Further to this, Kevin found a talk given by Dr Simmons extremely useful as he stated that: Clinicians need to give clear, jargon free information on the access to equipment, emotional support and the condition itself in a timely way whilst also ensuring that these key messages are repeated on a regular basis. This talk reiterated Kevin’s previous feelings that there is an information overload to carers that needs to be addressed.
Overall, both Kevin and Chris felt that it was extremely reassuring that their efforts to acheive best practice in the UK by influencing clinicians that the use of multidisciplinary teams is needed now has evidence that suggests its effectiveness and necessity.
900 delegates attend opening session
There are now over 900 delegates who have registered and are now attending the symposium which is outstanding!
The opening session is the top billing session because every delegate attends – from this moment on; the sessions are split in two between scientific and clinical. So, as you can imagine, the auditorium was quite busy this morning.
As the opening session began, there was a roar of Velcro ripping apart as people opened their delegate bags. The sound resonated around the auditorium in an almighty fashion – maybe next year we will consider using buttons on the delegate pack instead of Velcro!
As I foretold, there were also a number of poster presenters putting up their posters at the same time as the opening session. However, not all of the posters have yet been displayed so hopefully as the day goes on all posters will be up.
Our attention was soon grasped by Mrs Köhler, patron of the German Alliance for Chronic Rare Diseases and wife of the German President and First Lady of Germany (pictured on the bottom right of the picture to your right), as she warmly welcomed us for attending in the hectic few weeks before Christmas. Just incase you don't know what our director of research development Dr Brian Dickie looks like, he is also in the picture on the bottom left. Brian works incredibly hard to organise the symposium every year and it was his responsibility to represent the MND Association when Mrs Köhler was welcomed to the event.
After the formal introduction, Baroness Finlay, a patron to the MND Association (pictured on the top row in the middle), took to the stage. Chris, Kevin and I all agreed that Baroness Finlay gave an extremely inspiring talk on palliative care. She stressed that good communication and good listening is essential if health and social care professionals are to help patients who are feeling helpless and hopeless. She also urged us to consider children who will be affected by the diagnosis and progression of MND in their family. In her experience, she has found that children want their family to be happy, so they do not want to ask questions that may make adults feel uncomfortable. Ultimately, these questions need to be answered however difficult this may seem. Families need to understand that a child’s grief is different to that of an adults and although a child may ask insensitive questions, this does not mean that they are not grieving, just that they are trying to understand how their world will carry on from a practical point of view, such as who will take them to school now that they have lost a parent or loved one.
Prof Robberecht, an eminent researcher who next took to the stage, used a SWOT analysis (Strengths, Weaknesses, Opportunities and Threats) in relation to where we are today with MND research in our search for an effective treatment. What stands out in my mind about his talk was that he told us not to underestimate the achievement of Riluzole as a treatment for MND, as it is a remarkable achievement that is often overlooked in our search for new and better treatments. He also said (through showing us results from a study) that the use of a multidisciplinary team can increase the survival of somebody with MND by 46% which really bought it home how beneficial these teams are for people living with MND. Prof Robberecht also explained that in our search for an effective treatment we should avoid identifying genes that can cause, or modify the progression, or onset of MND without studying them as this is both a waste of money and time. He also stressed that we should not omit rigorous science with excuses of the pressure to find a cure. He finished his talk with an outlook that research in the future needs to be multi-disciplinary, collaborative and focused and said that “The future has never been so hopeful”.
As an added note to the anonymous comment left on the blog entry below – Belinda and I gladly didn’t get RSI from setting up the poster session but we were both very tired afterwards!
Monday, 7 December 2009
Poster set up
Today, Belinda Cupid, research manager for the MND Association, and I co-ordinated the set up of 200 poster boards ready for poster presenters to display their posters. Our deadline was 4pm and luckily we made it as the clock struck four. This may seem like quite a trivial task but it involved strategy, willpower and determination to reach our deadline.Now that the poster boards are up, presenters can put their posters up in their allocated spots when they arrive. All posters should be on display until the end of the symposium. Some of the presenters seemed quite keen to put their poster up, coming through the door at 4pm whilst others I’m sure will be rushing to put their poster up tomorrow morning! Hopefully, the poster session, which will be held on Wednesday morning (9 December) will have an excellent atmosphere and will stimulate some interesting conversations.
So far, over 840 researchers have registered for the symposium which starts tomorrow morning, the clinical session of which will be held in the room shown in the picture on the left. Tomorrow, the symposium will begin and I hope that you will enjoy reading what has been happening in the world of MND research in the last year.
Sunday, 6 December 2009
Guten Tag!
We have finally arrived in Berlin! Over the weekend we have visited some tourist spots such as the Fernsehturm Tower (which is featured in the Berlin Symposium logo), the Brandenburg Gate as well as numerous Christmas markets to get a real feel for what Berlin is all about – it truly is a cosmopolitan city with a lot to take in. We have also seen a few familiar faces (who will be attending the symposium) on our travels around Berlin who are also taking in the sights before the symposium begins. On Sunday 6 December, we first set foot in the Hotel Maritim Berlin, where the symposium will be held. Our first impressions were of the beautiful foyer where our bright eyed symposium staff were waiting for delegates to arrive and sign in. We then whisked ourselves off to the PR room to check that all of our equipment had arrived undamaged. I am happy to say that everything has arrived safely – including our enormous volume of Velcro and over 800 delegate bags to be distributed to our delegates.
The final preparations are now being made including assembling name badges, separating poster labels (so that poster presenters will know where their poster is situated) and putting up poster boards.
In answer to PALS and CALS in the UK who commented on my last blog entry – I’m afraid that we do not have a symposium Twitter account. This is the first year that we have used New Media to report on the symposium and I will be feeding back as much information as I can through this blog with the added support of two of our RCDAs, Kevin and Chris.
If you are interested in keeping up-to-date with this blog then you could either follow me, or subscribe to the blog using a Really Simple Syndicator (RSS) feed or save this page as a favourite.
Tuesday, 1 December 2009
One week to go...
With exactly a week to go until the doors to the symposium open for researchers, clinicians and health and social care professionals, we are all feeling a growing sense of anticipation. A last minute bombardment of enquiries from panicked poster presenters asking their ‘better late than never’ questions of what size their poster needs to be informs us that this feeling is mutual. In case you wondered, posters can be any size up to a maximum of 1 metre square.
As it stands today, a total of 812 people have registered to attend the symposium – that’s already 59 people more than last year without taking into consideration those who will be registering on the day.
Some of you may already be aware that the symposium platform presentations are split into two sessions, scientific and clinical, that run simultaneously. In general, the scientific sessions aim to reveal recent advances into the causes and mechanisms of motor neurone degeneration and the clinical sessions aim to stimulate improvement in quality of life for people living with MND.
This would normally leave us with a dilemma as to which session to attend. However, with the help of two of our regional care and development advisers, Chris Lynch (Greater Manchester and South Lancashire) and Kevin Thomas (North Wales) our dilemma is evaded. With Chris’ and Kevin’s help and expertise with regard to care issues, I will be able to report on both sessions with what they really mean to you.
For those of you with a curiosity as to what this year’s symposium is all about before it all begins, you may be interested to know that the abstract book (see blog entry below of an explanation of what the abstract book is) is now live on our 20th International Symposium website just click on ‘Abstract Book 2009’ – just please don’t tell me if you find any typing errors!
As it stands today, a total of 812 people have registered to attend the symposium – that’s already 59 people more than last year without taking into consideration those who will be registering on the day.
Some of you may already be aware that the symposium platform presentations are split into two sessions, scientific and clinical, that run simultaneously. In general, the scientific sessions aim to reveal recent advances into the causes and mechanisms of motor neurone degeneration and the clinical sessions aim to stimulate improvement in quality of life for people living with MND.
This would normally leave us with a dilemma as to which session to attend. However, with the help of two of our regional care and development advisers, Chris Lynch (Greater Manchester and South Lancashire) and Kevin Thomas (North Wales) our dilemma is evaded. With Chris’ and Kevin’s help and expertise with regard to care issues, I will be able to report on both sessions with what they really mean to you.
For those of you with a curiosity as to what this year’s symposium is all about before it all begins, you may be interested to know that the abstract book (see blog entry below of an explanation of what the abstract book is) is now live on our 20th International Symposium website just click on ‘Abstract Book 2009’ – just please don’t tell me if you find any typing errors!
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