Q&A with SmellTaste2017 organizers Duncan Boak and Steven Munger

Q&A with SmellTaste2017 organizers Duncan Boak and Steven Munger

Some questions for SmellTaste2017 organizers Duncan Boak (Fifth Sense) and Steven Munger (UFCST)

1. Why are smell and taste so important to you?

Duncan: I’ve spent over 11 years without the sense of smell and in some ways it’s probably more important to me now than it was when I did have it due to my work on behalf of people with smell and taste impairments. Educating people on smell and taste is something I’m very passionate about and is crucial to developing a wider understanding of the issues associated with these conditions and the need for more options for treatment and further research.

From a personal perspective my sense of taste is really important to me. I miss out on so much of the overall flavour of food and drink but I can appreciate the basic tastes – sweet, salt, sour, bitter, umami – and focus on these when eating. I love cooking and I’m very fond of using contrasts of basic tastes such as salty and sour when I’m preparing dishes. I’m looking forward to sharing more foodie tips at SmellTaste2017!

Steve: Like many, I particularly notice my chemical senses (smell, taste, and chemesthesis—the heating, cooling or tingling that comes from many spices) in the context of food and drink. I especially enjoy cooking and trying out new foods, beers and wines.

However, I also engage the chemical senses in my research, which focuses on understanding the fundamental mechanisms by which we detect odors and tastes. I am fascinated about how we are able to detect the various chemicals that make up an odor or taste mixture using specialized molecular receptors in our nose and mouth; tease those signals apart through dedicated detectors and nerve cells; and put it all together in the brain in a way that we can make sense of it all. Interestingly, it was this interest in the science of smell and taste that made me much more aware of how my own chemical senses contribute to my daily life.

2. How did SmellTaste2017 come about?

Steve: I moved to the University of Florida two years ago to take over as Director of the UF Center for Smell and Taste (UFCST). Part of my goal for the UFCST is to increase our outreach efforts to better educate the public about the chemical senses. Talking to Duncan Boak of Fifth Sense (who I had never met) was part of that effort. So was doing an “Ask Me Anything” session on Reddit in 2015 about smell and taste. I was stunned to see how many people needed information about smell and taste function and dysfunction, as well as how many with smell or taste disorders felt alone or poorly understood. Having heard Duncan discuss their successful meetings in the UK, I proposed joining forces here to host a meeting that combined the patient advocacy and support experiences of Fifth Sense with the research, educational and clinical strengths of the UFCST and UF more broadly.

Duncan: I first spoke to Steve via Skype in mid-2015 and was really impressed by his keenness to engage with and support people affected by smell and taste disorders. When he suggested we work together to deliver an event at the University of Florida myself and the other members of the Fifth Sense board of trustees felt it was a great opportunity to use the experience we have gained from our Members Conferences in the UK to help people in the US. I’ve received several emails over the last couple of years from Fifth Sense members in the States asking if we could do an event ‘across the pond’, so it’s great that Steve and his colleagues at UF are enabling this to happen.

3. What benefits do you think the event will have for those people with a smell/taste disorder who attend?

Steve: We hope to provide straightforward and clear information about smell and taste, how they work, how they can stop working properly, options for what to do if you have a smell or taste impairment (sometimes therapies, sometimes lifestyle changes), and some insights into the future of treatment. We also want to provide attendees the opportunity to meet each other, share stories and strategies, and develop support networks, as well as learn about how to best talk to their doctor about their problem.

There is something that we very specifically DO NOT want to do. We do not want to provide false information or make therapeutic promises that can’t be kept. All too often I see incorrect or misleading information in the mainstream or social media, or even from so-called professionals. Some so-called therapies are bunk and may even be dangerous.

Duncan: Having a smell/taste impairment can be an incredibly isolating experience and very hard for others to understand. One key benefit that SmellTaste2017 offers is the opportunity to get together with other people with the same condition, something we know that many people have never had the chance to do. As Steve says, we can support and learn from each other and, of course, gain a great deal of useful information from the experts present.

I’d agree with Steve as to his second point. Fifth Sense has always had strong links with clinicians and researchers from day one and we have always had these experts providing information at our events.

4. SmellTaste2017 represents an opportunity for people affected by smell and taste disorders to come together with clinicians, scientists and, of course, each other. What are you most looking forward to at SmellTaste2017?

Steve: I am hoping that we can help build a community. Groups like Fifth Sense have started this in the UK, and there are also important groups on Facebook and other platforms. There are millions of people affected by smell or taste disorders, but very little understanding in the broader community (let alone in Congress) about the serious impact of these disorders on quality of life for so many people. Diseases and disorders (including those affecting other senses) get attention when affected individuals, their families, scientists and clinicians get together to advocate for research and mutual support. I hope SmellTaste2017 will help get us to that point for chemosensory disorders.

Duncan: I completely agree with Steve – it’s about developing a sense of community and the possibilities that this can offer in the longer term. I’m also really looking forward to meeting people at the event, some of whom I’ve been in contact with over email for some time; it will be great to put faces to names.

Another thing that I’m really looking forward to are the foodie parts of the event. On the Friday evening we are going to be doing some beer-tasting with craft brewery First Magnitude, focusing on basic taste and mouthfeel. Then there’s the Saturday night banquet for which the UF catering team are designing a menu with our guests in mind – so think contrasting textures and basic taste elements. We’ve done the same thing at our UK members conferences and the food has always been a highlight for many people. I’m looking forward to dinner!