The meeting:

On June 17^th I attended the annual Alopecia UK Research Committee meeting along with fellow Lay Research Panel member Callum. Given the Covid 19 pandemic it wasn’t a normal meeting in that it was conducted via Zoom, so it was slightly odd to find yourself amongst AUK Trustees, researchers, Professors, Scientists and Doctors. Odd only though in the sense that a normal first meeting would entail handshakes and the usual social norms we are all so accustomed to. That aside it was quite possibly the most qualified and academic group of individuals I have met with all in one go! We met up to discuss the applications received for this years funding call and make recommendations to the trustees. 

Despite the unusual nature of the gathering with folk placed across the UK, Ireland and Sweden I was glad to have had a prior zoom meeting with my fellow lay research panel members so I knew who Callum was and also had a better feel how we could represent the panel in this meeting. 

The committee chair, Simon Milling, was excellent.  It’s not easy guiding everyone smoothly through a Zoom meeting, with broadband instabilities, loss of sound and the constant juggling of mute on mute off.  We also had some members having to duck out during conflicts of interest, not to mention the challenge of finishing on time too! He was very inclusive, and we were encouraged to chip in with our lay views. 

The applications:

We had been asked a couple of months ago to assess 13 grant applications, scoring our results according to criteria and sending them through to the charity’s research manager Carolyn. The Research Committee also went through their own process and the applications were ranked for us to discuss them and vote.

There were eight applications vying for the two main £10,000 Research Pots awards, so we discussed the top ranking applications with a view to selecting the “Committee’s Choice” award and then nominate a further three for the “Patients’ Choice” award. It was absolutely fascinating to hear the experts’ views and they in turn were interested to hear our lay comments and those of the AUK Trustees. We learnt about other research projects underway in other areas and also witnessed the helpful hand of the experts who were able to make suggestions for those who were not successful in this years’ round but who they felt may benefit from constructive guidance and/or to be put in touch with others researching similar areas. We all then voted privately via a zoom poll, and the successful applicant, Dr Christos Tziotzios, from St John's Dermatology received the majority vote.

We then discussed the three small grant applications, one of which was awarded to Tuntas Rayinda, from Kings College London.

Finally, the PPI grant applications were reviewed and after quite a lot of discussion Dr Shruti Narayanswamy, of the University of St Andrews received this vote.

What was it like? 

I felt very privileged to be a part of the process and amongst so many talented individuals. I was made to feel very welcome and not in the least intimidated by my lack of knowledge. I come from an arts background so together with my new best friend google I am navigating my way around a new language of scientific words, phrases and terms. Carolyn is brilliant at steering the research ship and leading us novice crew members through what is for me uncharted waters. I am very much enjoying the learning and the challenge and I hope my input as someone with alopecia is helping to steer the research towards some exciting new frontiers whereby eventually one day there will be treatments and cures.

To find out more about the Research Committee, please click here

To find out more about our Lay Research panel, please click here

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