Have you listened to the latest episode of the ‘An Aromatic Life’ podcast? SmellTaste Ambassador Frauke Galia who is a Certified Level II Aromatherapist, smell coach and teacher who has spent her career in Perfumery sits down to discuss the mental and physical challenges that having parosmia can cause with Aba Williams @smellsyouremember , Megan Abernathy @parosmia_nutritionist , and Thelma Poupazi @paranosemia.

“In this episode, Frauke sits down with Aba Williams, Megan Abernathy, and Thelma Poupazi to talk about parosmia, the condition of having a distorted sense of smell.

This is an honest conversation about the physical and mental challenges of living with smell distortions.

Each woman shares her personal parosmia story, revealing not only how it changed their relationship with food, friends & family, and navigating everyday smells around them, but also the mental toll it takes, and the support that’s needed, to make it through the journey.

This conversation will leave you feeling it all! The heartache, the struggles, the hope, and most importantly the determination to make it through to the other side.

Like millions of people living with parosmia, these women are a true inspiration for their courage and willingness to share their story in the hope that it brings awareness and healing for their community.

Make sure to listen all the way to the end because these ladies have a message for all of us who can smell.”

To listen to this episode, please click the link provided – https://www.falkaromatherapy.com/30

We are excited to announce our first in-person event of 2021 with the SmellTaste – Liverpool/The North West Live Hub Launch Meeting.

Getting back to our National Lottery Community Funding agenda, we will be getting this local network up and running at the inaugral meeting at “The Fashion Hub” in the wonderful city of Liverpool on Friday the 10^{th of} September 2021 from 12.30-4.40pm with lunch, refreshments provided.  This event is open to anyone affected by smell and taste disorders and will give you the opportunity to create a network of important  and supportive relationships with other people affected by smell and taste disorders – family, friends and partners are welcome too. Specialist ENT clinicians from Liverpool Hosptials NHS Foundation Trust, Wirral Hospitals NHS Foundation Trust and Alder Hey Hospital will be talking about smell and taste disorders, treatments and  discussing their research and experiences. If you live in the North West of England and want to engage in our hub, get your ticket reserved!

Book your place(s) by clicking the link provided and follow the instructions –

On the 26^th of July 2021 SmellTaste Founder and Chair Duncan Boak and Trustee Robert Meadowcroft came to visit SmellTaste HQ to connect with the team – a real life visit for the first time since opening our office in March 2020 – delayed by many lockdown restrictions.

We have made great progress in making the goals of the National Lottery Community Fund ambitions a reality and we have now confirmed the launch of our Liverpool/NW England Hub meeting on Friday 10th September at the Fashion Hub in Liverpool.  We are in the process of organising a live event for our Scotland Hub in October and we have also confirmed the date of our bi-annual SmellTaste Conference – Saturday 20th November 2021 in Manchester.

Although Covid-19 remains part of our daily lives and we have all become more adept in using video call platforms; we will continue to host online conversations and events to engage people across the UK and the world but we are committed to bring people together again in person.

Introducing Robert Meadowcroft, SmellTaste’s newest trustee. Robert has a vast range of experience working in the 3^rd sector as the Chief Executive of Muscular Dystrophy UK for 8 years and 7 years as a Director of Parkinson’s UK. With his wealth of experience, Robert hopes to support SmellTaste in raising awareness about the need to improve clinical support and research for people affected by smell and taste disorders. We sat down with Robert to discuss SmellTaste and why he decided to join the team…

1) How did you get involved with SmellTaste and what are your thoughts about smell and taste disorders in terms of the impact they can have on people’s lives and the cultural awareness of these conditions?  

It was suggested by a friend that I should consider helping SmellTaste as he had been impressed by meeting Duncan Boak, the Chair and Founder. Duncan and I talked several times (over zoom during the lockdown) and I think my experience in helping charities to develop services and grow their income looked potentially helpful to SmellTaste.

I understand how smell and taste disorders are hidden disabilities that are not well understood by those who are not yet familiar with them. I am also aware that those people who have been born without a sense of smell or taste (such as those with congenital anosmia) have different needs than those who lose these senses. There is a great deal of work ahead for SmellTaste to drive research and work to improve clinical care across the country.

2) With Covid-19’s relationship with smell and taste disorders now well-documented how do you think the increased awareness of smell and taste disorders will benefit people affected? 

It appears the development of Long Covid will be a long-term feature of the Covid-19 pandemic which will affect more people than those who have sadly lost their lives. We are learning more about Long Covid and its prognosis as well as its prevalence in different groups in the population. This will lead to a greater awareness of the impact of the loss of smell and taste on day-to-day living. Improving awareness of the disorders and the work of SmellTaste to support people affected by them are key priorities for the charity.

With this greater awareness comes both a challenge and an opportunity for us. Our challenge is to ensure we can provide the support people need and also back research and steps to improve care and information. The opportunity comes through our role as the leading charity for smell and taste disorders in the UK. We can enable people to dedicate funds to high-quality, peer-reviewed research and also to come together with health professionals in the regions and each country of the UK to press for improved medical care and support.

3) From your many years of experience in the third sector, what do you think should be the priorities for Fifth Sense moving forward? 

I think the trustees have set ambitious strategic priorities from support for high-quality research to better NHS care and support. I am in my early days supporting SmellTaste but I think all charities grow and are effective when they listen to people living with the conditions and provide the support and advice they need. Some support will be provided online and some should be provided face to face at gatherings and conferences (as we exit the lockdowns).

Perhaps I should summarise what I would see as three important tasks:

· SmellTaste can enable people to support high-quality research looking for effective treatments by fundraising and making donations to a dedicated research fund;

· we can come together on specific campaign goals to influence decision-makers in the Parliaments and Assemblies;

· we provide opportunities for people to meet others who are living with the same condition and sharing the same difficulties.

We need to show that we listen and we care about the things that matter to people. We must be efficient and work to eliminate waste wherever we can – I have often said any fool can spend money, the difficult thing is to raise money and spend it wisely.

I would only add that I think fragmentation and duplication are wasteful and unhelpful. SmellTaste works across the country (and indeed in partnerships outside the UK) to represent all those living with smell and taste disorders. I think people should come together rather than form smaller, separate groups. It has become a cliché to say we are stronger together but for a relatively less well-known group of conditions this is true.

4) In your SmellTaste bio you have stated that you love visiting new places, where would you like to visit that you haven’t been to yet and why?  

I think the lockdown and the restrictions we all faced during the pandemic have been difficult but necessary. In terms of travel, my wife has long dreamed of visiting Venice and I have wanted to visit Florence for many years.

We planned before the pandemic to visit both Venice and Florence as the two places at the top of our ‘wish’ list. We have had to rearrange the trip three times but we now intend to go in April 2022. I am already looking forward to celebrating my birthday in a restaurant in the shadow of the Uffizi Gallery, Florence.

SmellTaste is proud to be featured in the July/August 2021 Edition of ENT & Audiology News, where our Director of Development and Operations Nina Bleasdale discusses our James Lind Alliance Priority Setting Partnership for smell and taste disorders. ENT & Audiology News is a leading publication in the world of the sense of smell and taste with many of the top experts in the field being featured in their physical magazine and on their digital platforms. As our Priority Setting Partnership continues to develop, we will be keeping you all up to date through our SmellTaste newsletter. If you are currently not a member of SmellTaste you can sign up free at: https://www.smelltaste.org.uk/join/.

The outcomes of this Priority Setting Partnership will include:

• To bring patient, carer and clinician groups together on an equal footing.
• Identify questions which cannot be answered by existing research.
• Work to jointly prioritise identified uncertainties.
• Produce a final list (often a top 10) of agreed research priorities, publicise them widely, and make sure that other uncertainties are recorded and available for researchers and research funders to access.
• Provide a rare and valuable opportunity for patients and clinicians to shape the health research agenda.

To read the full digital article, please click the link provided –