CCLG work closely with The Little Princess Trust (LPT) to fund the best childhood cancer research. Our partnership is a vital part of our mission to change the future for children with cancer, and we want to share more information about why the partnership exists and how it helps the world of childhood cancer research.
Last week, I sat down with Wendy Tarplee-Morris, Director of Services and Impact at LPT, who is one of the founders of this special charity, to find out more about their work…
Hi Wendy, thank you very much for joining me today to talk about The Little Princess Trust! As a co-founder, I’d love to hear more about why you chose to set up the charity?
Hello and thank you for wanting to do an interview with me!
In 2005, we lost our daughter Hannah to Wilms tumour, a type of childhood cancer. When she lost her hair during treatment, we were really surprised that there was so much help available for so many different things - but not for hair loss. It was something that we specifically asked about, because we knew that it would have a real impact on Hannah as a five-year-old. Our only option at the time was a voucher for a synthetic wig which wasn’t suitable for a young child at all. There seemed to be very little importance placed on that element of a child going through cancer. Whilst Hannah was in treatment, her father Simon and I said that if there was ever the opportunity to do something when Hannah was better then we would.
After she passed away, in 2005, her school and some friends raised some money in her memory, and they asked what we would like to do with it. It was the perfect amount of money to buy a real hair wig for a child in treatment and it seemed obvious to be able to help another child like Hannah.
We purchased a wig through the hospital where Hannah was treated. But by the time that process had finished, people had heard what we'd done and had raised a little bit more and so on.
So, we provided another wig and then another wig. Very quickly, we realized that this was something that people wanted to support. From there, it has grown and grown - in our first year we provided 36 wigs to children, and now we are providing nearly 2,000 wigs a year.
It wasn’t long from the launch of the charity that people started to send us their hair. They could see we were providing wigs so thought ‘You know, I've got some hair. Can you do anything with it?’ We felt like we had a responsibility to put that to good use, so we sent it on to our wig suppliers. These days, we have our own wig makers on site and almost all of our wigs are made from hair donated to The Little Princess Trust.
I love that people just started sending you random envelopes full of hair thinking, ‘Why not?’
Yes, it was amazing! What a gift – hair is something so personal to give. It definitely came with a big responsibility to do the right thing with it.
It sounds like a lot of pressure! What were you working as before setting up LPT – had you worked with charities before?
No, not at all. When Hannah was born, I was fortunate to be able to stay at home. After she passed away, I worked for a local newspaper in their advertising department, and that was where I was when the charity was starting to take shape. I was kind of juggling the two, which was tough. Neither Simon nor I had any charity experience at all, and it was all brand new. It's been a very, very steep learning curve.
Was it quite a challenge moving from that to running a charity?
Fortunately, the headmaster of Hannah’s school had experience in setting up a charity, so we had a lot of hand holding from him. With the fundraising, I think we were very lucky it was something that really captured people’s imagination.
It just naturally occurred that the more children we helped, the more support we received. We’re proud that we’ve never had to use a waiting list or anything like that and we've always been able to help any child with cancer who's approached us for support. We operate as a service which should be offered to all children and young people with cancer. There is no application process, no means testing and the process of obtaining a wig is as simple and straightforward for the families as it can be.
But there is still a huge amount of effort that goes into it, because it’s important to support the people who are supporting you. We make sure everybody's thanked and everybody feels really valued for what they've given, which all helps to make people see that they're contributing something important.
I suppose that's where the hard work is if it is hard work. I think when you're passionate about something, it doesn't feel like work and effort anyway.
What makes up the LPT’s mission?
We wrap it up as we give ‘Hair and Hope’ to children and young people with cancer. Part of that is through our wig provision, which gives the immediate help whilst they're going through their treatment, and the hope element is through our research funding.
In 2016, we were lucky to be able to add a new objective for the LPT, because we've been so well supported by our fundraising community. We thought if we have the opportunity to do anything, it should be to try to make it so that there was no need for the wig service. The only way to do this is by funding research that looks to find better and more effective treatments for childhood cancer, with the ultimate aim of making children’s cancers a thing of the past. So, we started funding research that year with the help of CCLG, who administer the application process and to make the whole thing possible.
How did partnering with CCLG help shape your research programme?
It was of vital importance to us that the research we were funding was high quality, high impact and of great value. However, we realised it was very complicated to actually start funding research.
Ashley, CCLG’s CEO, has been fantastic at supporting us through the entire process. Because of CCLG’s membership, they have access to a vast range of experts and cancer research professionals. They could advertise the grant rounds to their members, and they had experts that could do the necessary thorough scientific reviews of the applications.
It was of vital importance to us that the research we were funding was high quality, high impact and of great value.
Working with CCLG not only helps us to fund the best quality research, but also it means that we aren't duplicating resources like scientific advisory boards and research managers, which would be very expensive. It means we can use more money to fund expert research, rather than spending it on the process that is required to do it.
Our partnership has also helped us to support our researchers. We don’t just want to help children with cancer, but also the research community too - to help them achieve their goals and nurture the next generation of childhood cancer experts.
CCLG has been crucial to us to ensure that we can fund more research that is valuable and has great scientific excellence, whilst helping the researchers achieve their full potential.
In 2022 you hit the £20 million mark for your contribution to childhood cancer research, which has funded over 100 individual research projects. I know that’s quite a lot, but do you have a favourite?
There are so many projects and as a non-scientist it's almost impossible to remember every single one, but there are always projects that really stand out.
It’s really hard to pick favourites, but my personal favourites are the ones where you can really see some tangible result. Where there’s something that seems new and exciting, but you can see how it will go from the lab and into hospitals. Those are probably the ones that excite me the most.
Where there’s something that seems new and exciting, but you can see how it will go from the lab and into hospitals. Those are probably the projects that excite me the most.
On a personal level, I’ve always got a keen interest in Wilms tumours as this was the cancer that Hannah had. But there are always going to be projects that stand out as ones you have a particular interest in.
Another thing is that a lot of projects are complex and so take a long time. That’s why clinical trials are exciting - because the end goal is in sight. When we have the opportunity to be involved with trial funding, it’s very exciting because it feels like children will benefit sooner.
I think my favourite is Rob Ewing’s project on treating brain tumours with the Zika virus because it’s just so out of the box.
I was going to say that one too! It's things like this that leap off the page at you. It's very exciting because I think there's a real potential there for high reward. And in our world, high reward is measured in children's lives saved.
I know you are keen to get charities working together to improve childhood cancer research and care. What are some of the ways that we can encourage collaboration over competition?
One of our big goals is to bring people together, to share their work and their ideas. It makes no sense why there might be two people in research labs at opposite ends of the country working on very similar projects but are funded by two different charities. Charities shouldn’t be about competition because everybody should be working towards the same goal.
Charities shouldn’t be about competition because everybody should be working towards the same goal.
Bringing the experts together, who may be working in similar areas, with the charities funding that type of work - it just makes complete sense to collaborate.
In the same way charities shouldn’t be competing, experts shouldn’t be competing either as everybody should be working towards one goal. We need to help charities come together to collectively fund the best work, and support researchers to help them share knowledge and data.
It's clear that you are passionate about everything you do - even after 17 years. If there is one thing that keeps you and the charity moving forward, what would it be?
Purpose - our absolute laser focus is always on our purpose, which is ‘Hair and Hope’. We are very close to the people who would benefit from our research funding. We hear daily from families and children who are going through cancer treatment, and it keeps us very close to our purpose.
We know that giving wigs to children going through cancer is not a magic wand. It's certainly not, but it is taking away one of the many difficulties they are facing. And then, with the research, we are giving children and families hope that the future will be better.
What do you love most about The Little Princess Trust?
It's hard to pick the thing I love the most because part of it is that we are here for everybody – we genuinely want to help children and do the right thing. It's not about trying to be the biggest or trying to keep growing bigger and bigger, it's about being able to help more children.
What makes this part of LPT’s ethos is our staff – they are amazing. Everybody's completely driven by what we do, and this is probably my favourite thing. As Hannah's mum, and I'm sure her dad Simon would also agree, the charity feels like such a fitting legacy for Hannah because of how committed everybody is to do more and help more. It's ingrained in everybody and every fibre of the charity.
That was one of the things I noticed when I visited your office - everyone's so passionate and there's so much about Hannah there that it seems everyone almost thinks of her as family, which is lovely.
It is. I think we are fairly unique - there are a lot of charities funding research, but I think the combination of what we do is quite unique. So maybe that's what I like the best. The uniqueness of our combined mission and that we are not afraid to do things differently.
So, last question. Is there anything that you think is important for everyone to know?
We are not under any illusions and, whilst we hope that we're doing a great job and moving in the right direction, we are very aware there is such a long way to go. There's so much work left to do, and we really will not stop until it’s done.
You can find out more about The Little Princess Trust on their website, or take a look at their research projects.
Ellie Wilkinson is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on Twitter: @EllieW_CCLG