The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Behind every good charity is a great board of trustees

Personal stories

6 November 2023

There are nearly one million trustees in the UK, and Claire Gore is one of The Lily Foundation’s. We spoke with her to mark the occasion of Trustees Week (6th-10th November) about why she joined our board and what she gets out of the role.

A lady with bobbed blonde hair smiling

How did you first find out about The Lily Foundation?

It was through my stepdaughter Kate, who is Liz’s sister-in-law, that I first got to know Liz. I was keen to find out more about mitochondrial disease, and then I got involved in supporting the board to help the charity grow and achieve its 10-year plan. Hearing from Liz about how she started the charity after the very sad loss of Lily, and how she’s shown such courage and inspiration to so many people, I thought it would be a great charity to become involved in.

And how does your professional background fit in with this?

I worked for nearly 20 years in the Metropolitan Police in the fields of Human Resources and Organisational Development but have spent the last 13 years in the NHS as an HR director.

Throughout my roles, what I do has always been about improving people’s lives. That’s a strong ethos of mine, working with communities, trying to improve the representation of minorities. Within the health service there are lots of health, social, race and disability inequalities. It’s a passion of mine to try and drive reform in these areas.

Had you ever been a trustee for a charity before?

No, but I’ve got 13 years’ board experience as an executive director in the NHS. Of course, that’s different to being a trustee, but the experience I have is invaluable, especially around some of the governance and trying to formalise things to make sure we’re meeting our objectives, whether that’s financially or in terms of fundraising and research.

How do you find working with the other Lily trustees?

The great thing about our board is that everyone’s got something to add. There’s a huge wealth of knowledge and experience in the room, and there’s respect amongst all the trustees who are willing to listen. We tend to input and advise in areas where we’ve got knowledge and experience, so for me it might be around HR and workforce issues. We’ve got others with huge commercial experience, then we’ve got the legal expertise and so on.

It’s a fabulous development opportunity for all of us as well. Because we all work in different industries, it’s a great chance to listen and learn from others and to use our joint experiences, knowledge and skills to make the best decisions for Lily.

What’s the biggest challenge you face as a trustee?

Personally, when I first started it was understanding how a small charity functions, and since then we’ve recognised the need for a good induction. But I think everyone’s biggest challenge is time, and being able to coordinate our diaries. We’ve addressed that to an extent now by getting meetings in the diary potentially 12 months in advance. But we’ve also had a couple of full board away days this year which have been face to face, and they’ve been really beneficial, so we’ll definitely continue with them.

I guess the other thing is working closely with people you don’t know. You’ve all come together from completely different backgrounds, you don’t necessarily know each other socially, and some people have been on the board for longer than others. But it’s like any other board in that respect – in industry or healthcare, the board members change and it’s not dissimilar. There’s probably more stability on the Lily board than most others, actually.

And what’s the most rewarding aspect of the role?

Seeing the difference the charity makes. Obviously in terms of the research, and being awarded funding, that’s fantastic. But actually attending something like the Lily Family Weekend where you see first-hand the parents and children enjoying themselves and really appreciating the support and that network The Lily Foundation provides them, it makes you realise how much it’s needed.

Because mito is a rare condition, you probably don’t know another person local to you with it. So the beauty of it is bringing people together who can not only discuss their experiences but also make the clinicians aware of the challenges they face and what could be done to improve their lives.

How else have you been involved with the charity?

I’ve been to a few events – not as many as I would like. I’ve been to the Lily ball, to the boxing, and my husband goes to the golf day. I haven’t actually done any fundraising myself because I can’t run! I do need to do some fundraising but I haven’t quite found the time to do that. I need to do something but I need to work out what that is first!

What do you admire most about The Lily Foundation?

Obviously Liz herself. The fact that the charity was set up at a very difficult time, and for Liz and her family, for the girls and Dave, it’s always there as a reminder. It’s great in someone’s memory but it’s also always going to be tinged with that feeling of loss.

And the team she works with. They go above and beyond to really support those families and ensure we’re getting maximum funding to undertake research. It’s an amazing team with such motivation to ensure the profile of Lily is always kept as high as possible. And, of course, the impact it has on the families. I find it all very inspirational.

What are the board’s goals for the charity?

Improving the experience of the board members so the charity gets the maximum benefit. And income – I think it’s almost at pre-Covid levels again but because of the cost-of-living crisis, obviously it doesn’t go as far as it used to.

And, of course, to make the most of those research grants, because when we talk about our vision of finding a cure, that’s only going to come through research so that has to be a priority. And to do that you need to get those grants, fundraise and also raise awareness of the condition.

Do you think we’ll find a cure for mitochondrial disease one day?

With the advances in AI, technology and diagnostics, there are now occasions when we’re able to give a genetic diagnosis and even stop the transmission of the disease through reproductive options, so I do think so, yes. But how soon that will be I just don’t know. They haven’t cracked cancer yet and cancer in many ways is probably simpler than the complexities around mitochondrial disease. Also with mito you haven’t got such a huge patient cohort. I do think it will come, and I really hope it does. But as for the timescales, I’m just not sure.

What’s the most important message to get out about mito?

The key is to raise awareness of it, and of The Lily Foundation itself so that the support mechanism is there for people. Through Liz and the team, through counsellors, the networks, the opportunities that people have to come together, to keep raising the profile. And it’s been wonderful of late, hasn’t it? So many awards, the MBE and everything. That’s fantastic publicity and really deserved.

And finally, do you have any advice for someone who might be considering becoming a trustee for a charity?

For me it’s a wonderful opportunity to be involved in a charity that really supports families and those who have the condition, whilst pioneering research. But on a more general level it’s a fantastic opportunity to work alongside people you wouldn’t normally work with, learn from them and develop yourself. I love it and I don’t ever want to come to the end of my term!

Get involved

If you’d like to volunteer with us but aren’t sure where to start, there are lots of ways you could get involved and help those affected by mitochondrial disease – please get in touch. We look forward to hearing from you!