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What is your experience of asthma?

My oldest son Alex has had asthma since early childhood, along with eczema, severe food allergies and hayfever. He's now 14 and his asthma is generally well controlled, but we have spent many nights in hospital wards when this delicate balance is disrupted. Through my work with Asthma UK I have met many people with very severe asthma, so in many ways, we count ourselves as lucky.

Why did you decide to get involved with Asthma UK as a Research and Policy (RaP) volunteer?

I have been involved for so long now, that I honestly can't remember when or how my involvement started, but it has certainly built steadily, powered by my own desire to be involved in not only understanding Alex's condition more, but also putting something back into helping Asthma UK help others in our community.

Why do you think that research into asthma is important?

Whilst I recognise that asthma is a complex condition that affects different people in different ways, I have been involved with asthma research for long enough now to be confident that it will eventually become a thing of the past. But this will only happen with consistent investment and a determination on behalf of all of those involved in understanding both the cause and the potential cures for the condition. It has been fantastic to be involved in some aspects of that journey so far, and I am ever hopeful that that journey will be one that is achieved in Alex's lifetime.

Tell us about your involvement with Asthma UK funded research projects, or external projects that we've supported you to get involved with.

My involvement has really grown over the years principally on the back of my participation as a lay member of the Asthma UK Research Panel. This led on to joining the patient input platform (PIP) for U-BIOPRED (an EU-wide research project using information and samples from adults and children to learn more about different types of asthma) where I became Chair. I have subsequently become involved in the PIP for the new RASP-UK research programme (a large scale UK research project that aims to target treatments effectively in patients with severe asthma) and I have joined the Steering Committee for an exciting new clinical trail that is evaluating the effectiveness of a new treatment - Temperature Controlled Laminar Airflow (Laser for short). I have also become involved in the wider context of medical research in the EU I am a patient expert for the European Medicines Agency and I have joined the Scientific Advisory Board of ERACoSyMed - a new multidisciplinary European consortium that joined forces to develop an implementation strategy (road map) for Systems Medicine. I think that all probably demonstrates how your involvement with asthma research on behalf of Asthma UK can grow!

Why do you think that involving people affected by asthma is an important part of Asthma UK's research programme?

I believe that the best research comes as a form of collaboration between the research community and the patients who are affected by the condition. I have seen good patient engagement lift recruitment rates, provide clarity to the supporting study documentation and provide a lay voice that can help interpret the outcomes of research into language that helps boost public interest and provide a platform to broaden support for future studies. When research is well understood and widely communicated to the public, gaining greater levels of financial support and focus become much easier.

How has being a RaP volunteer benefitted you?

It has given me a fantastic sense of involvement and control I have learned so much to the benefit of Alex and others who I talk to about asthma barely a day goes by without it being a topic of conversation somewhere in my life. Through the volunteer activities, I have been lucky to meet some of the leading asthma researchers in the world and they have all been interested and engaged in Alex's story. Their commitment and passion to improve patient outcomes has equally driven my own engagement, and I have learned a lot about myself in the process.

What has been your best experience as a RaP volunteer so far?

Getting to the end of a big research project like U-BIOPRED has been really interesting to be part of 5 years is a long time to be involved with a project, and as in all aspects of life, there have been a fair share of ups and downs along the way. As the research now nears the end, it is really exciting to see the potential outcomes resolving hopefully for the direct benefit of all patients with severe asthma across the world as the research becomes a platform for other studies to build on.

Talking about the work of Asthma UK and the research at events has also been great to be involved in. I have spoken with alongside Alex to huge audiences at the European Respiratory Symposium in Vienna, ran a 5k with an Olympian, and met Sir Alex Ferguson and the inspiring Olympic rower, Katherine Grainger, whilst speaking at charity fundraisers. It has been fun and interesting in equal measure.

What are your hopes for Asthma UK's research, and asthma research in general, for the future?

We all want a cure don't we? It is essential that the research continues apace, and it's wonderful to see the UK leading in so much of this on the ground. The involvement of RaP volunteers is essential to help build and maintain an understanding of how asthma affects daily lives, how medication works (or not!) and what the impact of asthma is on people where priorities for treatment or support lie to help influence that research agenda.

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