Tag Archives: smell loss

Fifth Sense at the International Fragrance Association UK Fragrance Forum

IFRAUKlogoEmotion is key to the marketing of so many fragrances. We often hear references to lust, desire and even envy associated with marketing of fragrances. “These words are liberally sprayed around the fragrance halls of department stores. But do people really understand just how critical the sense of smell is to our emotional make up and psychological wellbeing?” asks Fifth Sense’s Duncan Boak, speaker at the IFRA UK Fragrance Forum which is being held on 16th October 2014.

The International Fragrance Association represents the fragrance industry on a global scale and promotes the safe creation, development and enjoyment of fragrance on behalf of its members.

Duncan will be drawing upon the experiences of Fifth Sense members to demonstrate just how important the sense of smell is to so many aspects of our lives, using statistics and comments from the recently published ‘Impact of Olfactory Disorders in the UK‘ research paper.

Click here to view the press release for the IFRA UK Fragrance Forum.

To find out more about IFRA in the UK, visit http://www.ifrauk.org

Apolline Saillard – Olfaction: Not Invisible Anymore

Central Saint Martins student Apolline Saillard recently completed her MA Communications Design project on anosmia, which featured contributions from Fifth Sense members.  Here’s Fifth Sense’s Sarah Page to tell us more.

‘Unknown Quantities’ is the title of a joint publication by MA Culture, Criticism and Curation and MA Communication Design students of Central Saint Martins University. The work in the journal is incredibly diverse, due to each student having the ability to pursue their own choice of topic; exploring themes of regeneration, gentrification, interdisciplinary and collaboration, especially across art and science. Among the students contributing to the publication was Apolline Saillard, MA Communication Design student.

Apolline got in touch with me late January this year. She was working on an piece of work about anosmia for UQ and asked if I would like to have my photographic series of portraits based on anosmia published in the first edition of UQ. My instant reaction was “YES, of course”! The photographs were something that I had worked on in September 2013, in hope that they would somehow catch the attention of the many people oblivious to the word ‘anosmia’. UQ was a great opportunity to do just that.

It was clear from reading Apolline’s emails that she had a keen interest in anosmia and I was extremely happy to find someone else exploring this. Finally, we met in person in March at the Fifth Sense charity press launch at the grand Senate House in London (which by the way, it was an absolutely fantastic day. I urge anyone with a smell or taste disorder or an interest in the senses of smell and taste to attend the next Fifth Sense event!).

Apolline's display at her degree show

Apolline’s display at her degree show

Fifth Sense Founder Duncan Boak and I both contributed to Apolline’s piece in UQ, and we were invited to the Lethaby Gallery in London for the launch party. I met Apolline there early to attend her workshop on Anosmia. Apolline lead her presentation while referring to statistics from the Fifth Sense ‘Quality of Life Impact of Smell and Taste Disorders’ survey and quotes from people affected by anosmia with accompanying images. A small bunch of onlookers sat and quietly listened to this completely unheard-of discovery unraveling before them. I gave a brief description of my work and then we both sat down to prepare us for the questions heading our way. Afterwards, Apolline passed around two 3D printed modeled noses and asked if they could tell the difference between the two. One was a replica of a person with anosmia, and one with their full sense of smell (obviously, there are no visual telltale signs). Anosmia is sometimes referred to as an invisible disability and this certainly came across well in Apolline’s work.

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L-R: Duncan Boak, Apolline Saillard and Sarah Page

Later that day we had chance to wander around the degree show with a glass of wine and take a look at the work surrounding us in the room. The exhibition housed some fantastic work, but personally one project in particular stood out for me the most. ‘Multisensory Plateware Design’ by Ferdinand Freiler focused on creating a more intense flavour and dining experience through the use of plateware. On display were two unusual white, small oval bowls. The characteristics (colour, texture, shape and size) were said to be specifically designed to compliment and enhance the eating experience. The first bowl had smooth small ridges on the outside, the second was the opposite, with evenly spaced spiky ridges. I thought how great of an idea this was especially for people who’ve lost their enjoyment in food.

At 8pm the launch party finally took off. The room was buzzing with students, tutors, contributors and members of the public. Following a very warm welcome, everyone involved were given a very public ‘thank you’ for the work they contributed. Some hundred printed copies of UQ were stacked upon each other on tables. Finally, I got my hands on it! It was a cheerful orange and grey book, over 1cm thick with a durable matte texture; something much more substantial than your everyday magazine. 23 pages in was Apolline’s work titled ‘ODOURS; Give Voice to the Silence’. Included was an interview with Patty Canac (olfacto-therapist), an hallucinatory illustration of the olfactory system by Rebecca Hendin, portrait photographs by Apolline and an article about anosmia and Fifth Sense with my images accompanying the write up.
photo-15I was extremely proud to see the piece finished. Seeing the whole 15 pages, all based on the olfactory system, gave me a sense of hope and determination for the future: What else can we utilise to spread the word? Who else can we get involved? Where could Fifth Sense be in a few years time?

I’d like to congratulate everyone involved, to the students completing their studies, and a very big thank you to Apolline for helping give people with anosmia a voice.

 

 

Apolline Saillard – Olfaction: Not Invisible Anymore:
http://2014.csmcommunicationdesign.com/students/apolline-marie-saillard/

Patty Canac:
http://www.olfarom.com

Rebecca Hendin – Illustration of the olfactory system:
http://www.rebeccahendin.com/#!l’art/albumphotos5=13

Sarah Kathleen Page – Anosmia photographic work:
http://www.sarahkathleenpage.co.uk/anosmia

Custard tarts all round at Tart Off in Bristol

The inaugural ‘Tart Off’ – a competition to find Bristol’s best custard tart – was held on 10th July 2014, with amateur and professional bakers from all over the city taking part. Fifth Sense Regional Coordinator Cath Pike didn’t let her anosmia deter her from putting on her apron and getting up to her elbows in custard, and here she is to tell us how it went.

 

It may seem to be an odd choice – to enter a cooking competition when I find it very difficult to perceive the flavour of food but I love a challenge and I wanted to prove something to myself. I have always loved food; shopping, cooking, eating and sharing it with friends and family. Since having anosmia this hasn’t changed but my taste and my confidence has.

I first saw mention of Bristol’s Tart Off on Twitter. I love Twitter. I love custard tarts. I love cooking. It seemed like a no brainer. I signed up…Then I read the rules – not too strict – you just had to make everything from scratch and have pastry and egg as the main ingredients. My Portuguese tarts used to be to die for but I don’t have a lot of spare time so I usually buy ready made puff pastry and lovely ready made vanilla custard. Making it from scratch could take some time… I made the very easy Gordon Ramsay rough puff pastry and then made Mary Berry’s custard. Then I made the tarts. I hadn’t thought through that part and ended up having to use three different sized tart tins. They looked fine although quite different in size. My daughter/chief taster said they were great and although I couldn’t find the requisite ‘two the same’ for the judges, my work was done.

When we arrived at the Folk House most of the other tarts were already there and looked sssoooo much better than mine. I had a Presentation Plate and others to sell to help support the Square Food Foundation. I hadn’t thought about presentation so my two tarts on a plate looked a little forlorn next to the exuberant cake stands/flowers/garnishes that everyone else had.

As Sod’s Law would have it my daughter won the lottery for the randomly selected judge on a panel of five. There was a professional and an amateur section. After much tasting and serious deliberation the winners were announced. My name wasn’t called so I didn’t get a chance to say anything about Fifth Sense as I had hoped. However my tarts were apparently deemed to be worthy and I loved the texture and sweetness of them. I couldn’t even identify the raspberry(?) in the base of one of the entrants and the nutmeg/cinnamon of others was lost on me.
I have realised that I can still follow a recipe and produce good food sometimes but I rely on a timer and not smell to tell when something is ready. I know my limitations and don’t tend to try out new things as I would have done before losing my sense of smell. At the end of the evening my daughter was the person who said she never wanted to see another custard tart. Ever. I left with the feeling that I wish I had made a lemon tart (I still “get” lemon). Macaroons are my new challenge. I don’t understand chocolate, vanilla or strawberry anymore but at least I am making something that friends enjoy. That’s what food is all about for me.

Best wishes, Cath

Cath is one of Fifth Sense’s Regional Coordinators who on hand to provide support and advice to other Fifth Sense members in their area.  If you’re a Fifth Sense member in the South-West of England who’d like to get in touch with Cath and exchange experiences – or indeed recipes for tarts – then visit http://www.fifthsense.org.uk/regionalhubs

For more information on the Tart Off event, visit http://tartoff.wordpress.com 

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Fifth Sense at Farsley Festival

We took part in the Farsley Festival in Leeds on Monday 26th May, and chose a prime location to talk about smell and taste to people – right next to the stall selling home-made pizza from the pizza oven in Farsley churchyard!

Perhaps unsurprisingly, what worked particularly well was the jelly bean taste test (getting people to eat a jelly bean whilst holding their nose – it has no flavour – and then letting go and the flavour suddenly rushes into the mouth).  We tried this with lots of people, many of whom thought it was amazing – so many people had no idea at all just how important the sense of smell is to flavour perception.

What was also noticeable, just as in previous public events we have done, was just how many people we talked to had a smell-related disorder.  In the first 30 minutes we spoke to four people with chronic sinus problems, two of whom had been given operations to remove nasal polyps in the past that had been completely ineffective.  We were able to pass details on of the clinicians with whom we are working which were gratefully received.

Another successful event, and as Fifth Sense continues to grow and develop then we’ll be looking to visit a town or city near you!

FSFarsley Fest

‘Does the smell of this make you think of a place, a person, a situation?’ The incredible power of the sense of smell in evoking memories

Fifth Sense at the British Rhinological Society Conference 2014

Fifth Sense participated in the 2014 British Rhinological Society (BRS) conference held on 16th May at the Assembly House, Norwich. The BRS is a sub-group of ENTUK, with membership consisting mainly of Consultants and Registrars who work in the field of rhinology – the nose and sinuses.

Our presence at the conference gave us an excellent opportunity to engage directly with the ENT profession and raise awareness of the impact of olfactory disorders, and the existence of Fifth Sense.

We felt that the conference was very successful from that perspective. There were a number of talks in the morning, one of which was from Tim Bradshaw. Tim has been working with Mr Carl Philpott on the Personal Accounts of Anosmia (PAAS) study, to which many Fifth Sense members have contributed their own accounts of the difficulties they face in living with the condition. Tim gave an excellent summary of the findings, along with anonymised quotes from the accounts.

This was backed up by an excellent talk from guest speaker Professor Thomas Hummell from the Smell and Taste Clinic at the University of Dresden. Prof Hummell’s talk covered causes, treatment, and the impact of olfactory disorders on patients, and was very well-received by delegates.

Following Prof Hummell’s talk, lunch was served, with guests being issued with a nose clip by Fifth Sense’s Duncan Boak. Dessert consisted of three different flavoured fruit mousses, labelled only with the letters A, B and C. Duncan introduced himself and Fifth Sense to the delegates, and explained how they were to try each mousse with the noseclip on, and guess the different flavours both with and without the nose clips. It was brilliant to see so many of the delegates really engaging with this, and gave Duncan the opportunity to go around, speak to individuals and tell them more about Fifth Sense and the negative experiences of so many of our members, both in terms of quality of life and also from unknowledgable and/or unsupportive doctors.

We also had the opportunity to catch up with nearly all of the Consultants we are working with who treat smell and taste disorders – Sean Carrie, Claire Hopkins, Lisha McClelland and Carl Philpott, who hosted the conference. We’d like to remind all our members of the smell and taste clinics page on our website – www.fifthsense.org.uk/clinics – if you’d like an appointment with any of the clinics featured on the site, then ask your GP for a referral. We also met Amin Javer, who runs a sinus clinic in Vancouver in Canada, with whom we are soon to start work with in providing support for Canadian smell and taste disorder sufferers.

All in all, an excellent day, with lots of new contacts made and plenty of awareness-raising done in a sector of the medical profession that is really important to Fifth Sense and smell and taste disorder sufferers. Hopefully we’ll be back next year!

BRS pic2

BRS pic1

Fifth Sense visits the Wellcome Trust Sanger Institute

On 22nd April Fifth Sense visited the Wellcome Trust Sanger Institute to meet geneticist Dr Darren Logan and his colleague Gabi Gurria. Many of our followers will have heard of Darren as he spoke at the Fifth Sense Charity Launch in March. His and Gabi’s work at the Sanger Institute is focused on understanding the genetics of behaviour, and how the sense of smell influences behaviour.

Much of the work that Darren’s team do involves studying the behaviour of mice, and how they respond to olfactory stimuli. For example, one such experience involved placing a drop of male mouse urine at a particular point in a cage. A female mouse was then released in to the cage, and made its way to the part of the cage where the urine was, attracted by the smell of the male mouse. When the same mouse was then released in to a cage without any urine, multiple times, it made its way to exactly the same spot. Thus, both behaviour and memory was influenced by the sense of smell.

Darren and his team aren’t just interested in olfaction in mice, however; they are also interested in how research in this area can potentially benefit smell disorder sufferers in future. For example, by studying the genes turned on in the nose of post-viral anosmia (PVOL) sufferers and comparing to that of people with a functional sense of smell, can gene expression patterns be detected in patients with PVOL?   As Darren explained, though, seeing patterns is one thing, but understanding why and how these occur is another, given that we still at the very beginning of learning how our genes make us who we are.

‘You can think of a gene expression pattern like a barcode for a particular cell or tissue in a healthy state (where each of 37,000 genes is on or off). If the cell or tissue is infected or damaged, the pattern will change – as will the barcode. Thus we may be able to spot a barcode that is characteristic of PVOL. The next phase is to ask which genes are differently expressed between the healthy and damaged tissues – as this may provide clues into how and why it is damaged and how it might be treated.’

The second part of our visit involved a tour of the Sanger Institute, which included a visit to the labs where DNA is sequenced to create complete sequences, or genomes. These are then stored so they can be analysed by the researchers at the Institute whose work encompasses many aspects of biomedics.

For more information on Darren’s work, visit http://www.sanger.ac.uk/research/faculty/dlogan/

To read about the Human Genome Project, the first time that the human genome was sequenced in its entirety, visit http://www.sanger.ac.uk/about/history/hgp/

DNA Sequencer1

DNA being sequenced in the Sanger Institute’s labs

DNA Sequencer2

Have your say in what you think is important for future ENT research with ENTUK’s Generate project

The launch of ENTUK’s Generate project provides UK-based smell and taste disorder sufferers with an excellent opportunity to help shape the future of research in the area of ENT (Ear, Nose and Throat) practice. ENTUK is the body that represents ENT medical practitioners in the UK – visit www.entuk.org for more information. The Generate programme is explained in more detail at https://entuk.org/ent_patients/generate

This is the first time that Fifth Sense members, the UK’s first body of people affected by smell and taste disorders, have had the opportunity to put their thoughts on research directly to the ENT profession. If you live in the UK and suffer from such a condition, then complete the survey by visiting the link below.

https://www.surveymonkey.com/s/ENTUK_GENERATE

Fifth Sense also has a stand at the British Rhinological Society annual conference on 16th May. Here we’ll be talking directly to the ENT clinicians in attendance about the issues faced by Fifth Sense members, using the results of our ongoing quality of life survey to demonstrate the impact that smell and taste disorders have on us all. Please support us in our efforts by participating in the Generate survey and make your voice heard.

Fifth Sense at Imagining the Future of Medicine

Fifth Sense had the privilege of participating in the Imagining the Future of Medicine event, organised by Imperial College London in partnership with TEDMed on April 21st. We were able to speak to delegates who attended The Cell in the Sir Alexander Fleming building on the South Kensington campus, where innovators in health care were on hand to discuss their work and objectives. Fifth Sense Founder Duncan Boak, Mr Carl Philpott of the University of East Anglia and the JPUH Smell and Taste Clinic, Maggie Rosen and Chrissi Kelly were on hand to meet the public and ask “What does your sense of smell mean to you”?

As well as discussing taste and smell disorders with visitors to the stand, we were using an innovative device called the Scentee to test people’s sense of smell.  This involved them smelling different scents emitted by the device and then completing a short questionnaire.  This was our first trial run of the National Smell and Taste Survey that we are planning on running in 2015.  This was a huge success and we had a small crowd of visitors around our stand for the duration of the event.

Duncan also delivered a talk in the lecture theatre to around 150 visitors in which he talked about the importance of the sense of smell to our lives, drawing on first-hand accounts of Fifth Sense members from our ongoing quality of life survey to demonstrate the huge impact that smell and taste disorders can have upon people’s lives.

As always, it is of great interest to speak to the public and hear their stories first-hand. Perhaps the most striking feature of our time at Monday’s event was the number of people who came forward to say that they, or someone they knew, suffered from some form of olfactory disorder. This supports what we already know to be the case: whilst smell and taste disorders remain largely hidden, the effects of them have far-reaching consequences.

The later part of the afternoon was spent in the Royal Albert Hall, where Dara O’Brian hosted the Imagining the Future of Medicine lecture series – three sessions with four inspirational speakers in each – on innovation, creativity and expertise in healthcare. Fascinating insights and plenty to draw on for Fifth Sense. During the networking event before and during dinner, we were able to meet a number of the speakers, and again, we were told people’s personal stories of anosmia. The recurring themes of the day for Fifth Sense were that those who are unacquainted with anosmia are surprised to hear of the profound effects on sufferers, and for those who already knew of the condition first hand, they are bewildered and isolated–an indication of the timeliness of the Fifth Sense message.

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What does your sense of smell mean to you? Duncan Boak delivers his talk in the lecture theatre at The Cell

Imagining the Future of Medicine in the Royal Albert Hall

Imagining the Future of Medicine in the Royal Albert Hall

 

Fifth Sense Charity Launch – Report

IMG_0231Saturday 15th March was a hugely important day in the history of Fifth Sense, as we launched ourselves as a charity with an event that looked at the ways in which the senses of smell and taste play a huge role in our lives, and also highlighted the problems faced by people who suffer impairment of one or both of these senses.

The day consisted of an afternoon press launch featuring talks from some of the academics, scientists and researchers with whom Fifth Sense is working, personal experiences from Fifth Sense members, with Fifth Sense Founder Duncan Boak talking about how his own experience of losing his sense of smell following a head injury led to him establishing the organisation.  The press launch was followed by an evening drinks reception organised especially for Fifth Sense members to come and celebrate what we intend to be a much brighter future for smell and taste disorder sufferers everywhere.

IMG_0225The launch event was held in the Macmillan Hall, Senate House, London, and was delivered in partnership with the Institute of Philosophy at the School of Advanced Study, who are leading the AHRC Science in Culture project ‘Rethinking the Senses’, in which Fifth Sense is a partner.

Structured as a ‘past, present and future’ of the sense of smell, the event opened with a fascinating talk from Urban Sociologist Alex Rhys-Taylor of Goldsmiths College on the importance of the sense of smell to western civilisation throughout history, focusing on London. Starting with the Romans, who sited their sewage treatment in East London, away from their homes, Alex explained how the sense of smell directly influenced culture and society through the ages. He also explained that it was during the Age of Enlightenment in the late 17th and 18th centuries that the sense of smell started to be perceived as being of lesser importance than the senses of sight and hearing; smell began to be viewed as a primitive, animal, sense, of no relevance to the advances that were being in understanding the world through science.

Duncan4Alex was followed by Fifth Sense Founder Duncan Boak, who spoke about the different ways in which the sense of smell affects our lives, and the different types of smell and taste disorders.  He also spoke about the many different ways in which such conditions impact on the lives of sufferers, using anonymous comments from Fifth Sense members who have completed the ongoing Quality of Life of Smell Disorders survey.  Duncan’s slides can be viewed by clicking here.

Duncan then introduced Fifth Sense member Charlotte Self, who spoke candidly about how her loss of smell had a profound impact on her life, and how it directly contributed to the breakdown of her marriage. Charlotte’s powerful and deeply moving testimony clearly demonstrated just how disorders of the sense of smell can have far-reaching consequences for sufferers.

IMG_0326editDawn Millard and her nine-year old daughter Abi then spoke. Dawn started by explaining how she had realised that Abi had no sense of smell after noticing how she never made reference to smells that her friends would remark upon, and then spoke about how doctors she had seen lacked knowledge and failed to even see it as being a significant problem. Abi then delivered a superb presentation on the sense of smell and how important it is to our ABIlives, the same talk she had given to her classmates at school. Abi also talked about the sponsored swim she did recently where she raised an amazing £1125, and presented the cheque to Duncan. The work that Abi has done to raise awareness of anosmia and the importance of the sense of smell has been incredible, and we are going to have a special blog post about her story very soon.

IMG_0378editAfter a break, Mr Carl Philpott, Consultant ENT Surgeon at the University of East Anglia / James Paget Hospital spoke about the different causes of smell and taste disorders and what can be currently done to treat them. He also talked about the challenges faced in undertaking research to develop new treatments, the main problem being the lack of awareness and recognition for such conditions amongst the medical profession and funding bodies.  The slides from Mr Philpott’s talk can be viewed here.

Duncan then spoke again about how Fifth Sense intends to develop its work over the next three years, stressing the importance of continuing to develop Fifth Sense as a strong, supportive community for smell and taste disorder sufferers, and how this community will underpin the three key areas of Fifth Sense’s strategy; support, education and research.  Mr Philpott then IMG_0372editjoined Duncan to talk about the planned Fifth Sense National Smell and Taste Survey, which will gather data on the prevalence of smell and taste-related disorders in the UK and provide a huge boost to our efforts to improve treatment opportunities and research in future.

Fifth Sense member Chrissi Kelly then spoke about the ongoing Fifth Sense smell training project that she is playing a leading role in, and how her own successful experience of following this process has informed the creation of the Fifth Sense Smell Training Journal, which will be available for Fifth Sense members to test out very soon.

Leading researchers Simon Gane and Darren Logan then did a joint presentation that covered the work they are doing into improving our understanding of how the olfactory system functions, and how this can lead to better understanding and therefore treatment of smell and taste-related disorders in future.

IMG_0400editDuncan Boak and Professor Barry Smith of the Institute of Philosophy then talked food; Barry explaining the role of the sense of smell in flavour perception and what taste really is, with Duncan talking about his own passion for food and cooking and how he makes the most of the other senses available to him when creating meals.

Wine journalist Maggie Rosen then led the wine tasting session, which had two purposes – to demonstrate the impact that smell loss has on flavour perception to the journalists present (who were issued with a nose clip to ensure a level playing field!) and also show that smell loss doesn’t remove the ability to detect differences in wines.  We’ll be putting another post on the blog to cover this in more detail very soon.

IMG_0410editFollowing the conclusion of the wine tasting, we then welcomed Fifth Sense members for the drinks reception, at which Duncan and Mr Philpott both spoke about the success that Fifth Sense has achieved in the relatively short period of time since its inception in mid-2012, and about future plans.  Duncan and Abi then cut the beautiful cake made by Fifth Sense Member June Blythe especially for the occasion.  All in all, it was a hugely successful and special day – onwards and upwards!

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We would like to say a huge thanks to all our speakers and our guests at the press launch, and the many Fifth Sense members who came to celebrate with us at the evening drinks reception.

Special thanks goes to the following people for their support and assistance in the organisation and delivery of the event:  Natasha Awais-Dean, Prof Barry Smith and all at the Institute of Philosophy, Maggie Rosen, Abraham Drewry, Nayan Gowda, Keeley Sellers and Sally Turberville-Smith.  And of course, a huge thanks to June Blythe for baking the amazing Fifth Sense cake – what a wonderful surprise! 

Thanks to Fifth Sense member Sarah Page for the photography – visit                                      http://www.sarahkathleenpage.co.uk to see more of her work

What Does Your Sense of Smell Mean to You? Fifth Sense Charity Launch, 15th March 2014

FSNewBranding2014On 15th March 2014, Fifth Sense launches as the first charity working in the area of smell and taste-related disorders, and raising awareness of the huge role that the sense of smell plays in our lives.

The event will be a demonstration of the rapid advances made by Fifth Sense since its inception in 2012 in supporting smell and taste disorder sufferers, and act as a showcase for our plans to develop and grow our work over the next three years.  For more information on the event, please view the press release here.

The Fifth Sense launch is being held in partnership with the Centre for the Study of the Senses, at the School of Advanced Study, as part of the AHRC Science in Culture project ‘Rethinking the Senses’, and will be preceded by an interdisciplinary workshop on the Two Senses of Smell.

***Please note that the afternoon press launch is by invitation only and tickets are not available to purchase.  However all are welcome to join us for the evening drinks reception, which is taking place at Macmillan Hall, Senate House, London WC1E 7HU, 6-8pm.  To purchase tickets for the evening drinks reception, please visit http://fifthsense.bigcartel.com.  We will look forward to seeing you there.

Here’s to a bright future,

The Fifth Sense team.