Let's Talk About Brain Tumours
Join us as we talk to those who have been diagnosed with a brain tumour, their friends, parents, partners and children as we talk about all things brain tumours. Find out more about how we are working to change the outcomes for those who are diagnosed with this terrible disease.
Please Note: We recognise that everyone's experience's are completely unique and will be different for everyone. The people who come on the podcast are sharing their own personal experiences, these may differ from yours or your loved one.
Let's Talk About Brain Tumours
Episode 42 - Spotlight on Family Led Partnerships
In this episode we talk to Phoebe Day our Gifts and Partnerships Manager at the charity. She explains what family led partnerships are, the different types and why they are so important to the charity. Family led partnerships are so much more than just rasing money for the charity as Phoebe explains in this episode.
If you have any questions you can email Phoebe directly byt emailing her at phoebe.day@thebraintumourcharity.org. You can also find out more about Family Led Partnerships here
You can also find out more about the Oli Hilsdon Foundation here and OSCAR’s Paediatric Brain Tumour Charity here
Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival.
Chandos:Hi, everyone, and welcome back to the brain tumour charity podcast in this spotlight episode, myself and Anna speak to Phoebe Day, who's the partnerships manager at the brain tumour charity, we speak about family led partnerships, and how the amazing work that they do, helps the brain tumour charity, go from strength to strength, and improve the quality of life for those affected by brain tumour.
Anna:Thank you so much Phoebe, for joining us on the podcast today to talk about family led partnerships. So I think a great place to start would just be to kind of explain a little bit what is a family led partnership?
Phoebe Day:t's a pleasure to be here so thank you so much guys for having me on so a family led partnership generally comes in three different formats, the most traditional format is a legal registered charity so these are charities like the brain tumour charity that have been set up in memory of a loved one, all with their own personality, branding and goals and these goals can really be specific to a particular tumour type, or a support priority linked to their loved ones experience. But what I would say they all do have in common is there is a loved one at the heart of all they do and and all of their work is driven by that they're incredibly special. The second model of a family led partnership, you may see the community be very familiar with families, you've set up GoFundMe pages to raise funds for alternative treatment abroad and sadly, a lot of the time we meet families who love whose loved ones weren't able to use those remaining funds. So we've been very fortunate to receive very generous gifts from families who've chosen to give those surplus funds from their GoFundMe page, and make sure that's still going to an area that that loved one was particularly passionate about whether that be research or support. And then our third example is a donor advisory fund, which sounds complicated, but in simple terms is basically a vehicle for charitable giving, without families having the burden or pressure of setting up their own legal registered charity and that's really offer several advantages, namely cost savings, tax efficiency, flexibility and it also means unlike if you set up your own charity, you don't have to worry about doing the reporting and the admin requirements because a donor advisory fund will do that for you.
Chandos:And why are family led partnerships so important for the brain tumour charity.
Phoebe Day:So as a charity that is passionate about collaboration, we know we are stronger together, there are lots and lots of amazing charities out there who are passionate about finding a cure for brain tumours, or providing support for families. And we know we can achieve far more when we pull our resources together to have a louder voice and generally a bigger presence. And most importantly, these partnerships are also community driven, and led by real families who've been directly affected by a brain tumour, their voices and experiences shaped the heart of all we do, and I would also say we're really fortunate to receive some multi year gifts, which means we have a more sustainable income stream, allowing us to plan for the future, whether that be research projects or planning the next support project. So it's really hard to sum up in a nutshell how important they are to us, but we love them all in all shapes and sizes.
Anna:So your role is a partnership manager at the brain tumour charity so you've just spoken a little bit about kind of what a family led partnership is and why they're so important so what is your role in making those partnerships happen?
Phoebe Day:So I always say as much as this sounds very weird. I love my job but hopefully one day I won't have a job and I will have to get a new job because this role won't be needed because we'll have found a cure to brain tumours and the brain tumour charity won't be needed. But until then, I get the honour to work very closely with families, learning about their charities and the loved ones in which they set up the charity for. I also offer guidance and advice to families who perhaps haven't decided what funding model they want to go down yet. Setting up a registered charity as I mentioned before can be time and resource heavy but here at the brain tumour charity we can ensure the family creates a long lasting legacy without necessarily having to set up their own charity.A lot of listeners will probably be far too young to know who Cilla Black is but I also joke that I'm often a bit of a matchmaker because I get the honour of pairing up families with the right project that fits their needs. So whether that is a support project, such as our new counselling project, or a particular tumour type in a research area, so one day I could be welcoming a family to a lab tour, the next day could be making a homemade cake to invite guests into the office to meet some of our experts. I would say the other area of my work, which is really important is cross collaboration across teams. So I work very closely with colleagues across the charity, from getting updates from our amazing research team. I also work very closely with our amazing press team so we can celebrate our partnerships and shine a spotlight on these really fantastic family led charities. And they are so important to us that throughout the year, we also ensure we have planned out touch points. So whether that's sending a handwritten Christmas card or recognising and remembering the date of when a loved one passed away, it's it's really important, we take that care so each and every partnership feels the love
Anna:That's a really lovely way to put it, that's really nice
Chandos:And you've kind of spoken about this throughout the whole time we've been speaking but what do family led charities get out of partnering with a brain tumour charity apart from helping us find a cure to end the horrible, horribleness that is a brain tumour?
Phoebe Day:It's a really good question so the first thing is they get their own dedicated account manager from our partnerships team so that might be myself, Abby, or our head of partnerships, Linda, and they will get the opportunity to come in, we love tea and cake in the office, as you guys will know so there's always lots of cake. So they can actually meet the people who are delivering the work so they can talk to research experts, they can talk to experts in the support area. When you partner with the brain tumour charity, you are joining forces, and we always say we are becoming part of a team and you can really have as much involvement with us as you like. For many geographically our families might live far too, up north or south and no matter how good our cake is, it might be too far to travel. But what we do ensure is we have virtual meetings and we'll do a virtual cuppa on Zoom so we try and replicate that as much as possible. We also offer lab tours, so families can meet the research that they're funding and see how that's going. But the other really important thing which might sound a bit boring to others, but is incredibly important is our annual reports. So each family will receive a progress report every year, that will detail everything that that project has achieved in the year thanks to their support. We're really, really hot on ensuring that those projects are making progress and we are using every pound of their money to good use and so it's really lovely to be able to celebrate the achievements with the family, on what gifts they've given us and how that has translated into progress and then the other thing as well is with our press team, we can give them publicity, they get invitations to events, there is lots and lots of things they get with us. And I would also say there is a misconception that to partner with us, you have to give us a huge gift, we love huge gifts, but you certainly don't have to give us lots of money ao even if a family led would like to partner with us on policy and campaigning or sharing their story, or simply just sharing our campaigns on social media, you will be one of our partners, and we would love to collaborate with you. We're just currently updating our website and we want to get as many family led partnerships listed on our website with their logo. So if anyone wants to join forces, please let us know because we love to show the love and make sure that it's a beneficial partnership on both sides.
Anna:You just really nicely lead me into what our next question was by saying you want as many kinds of examples of these partnerships on the website. So do you have any kind of key examples of partnerships or projects that have gone really well that you've been really proud to be involved in?
Phoebe Day:So whilst our partnerships vary in size, and some may be 1000 pounds, and others a million, every single one of our family led partnerships is absolute gold to us. But just to give you a few examples, we have the Oli Hilsdon Foundation, who have committed to funding 1.5 million towards the GBM research project at University College London led by Professor Simona Paronella, in memory of Oli Hilsdon, who died aged 26 from a GBM. The Oli Hilsdon Foundation are a force to be reckoned with, and are doing some fantastic work in fully funding this project and we are really excited to share the results of that project when it comes to an end in memory of Oli. We also have Oscars Paediatric Brain Tumour Charity, who have been supporting us for over eight years and have raised 1000s of pounds for us, most recently supporting our Better safe than tumour campaign and this is all in memory of Oscar Hughes, who died at age nine. And then another example of just the geographical spread of our family led partnerships is the Naseem's Manx Brain Tumour Charity, who are based on the Isle of Man, and not only very kindly financially support us, but are also very passionate about sharing our resources. So instead of duplicating resources, they decided to use better safe than tumour at their fares at their pop up stalls, when they're talking on radio shows, which is a really great example of where we can save money by using each other's resources. But I what what I would say as well, we have so many amazing partnerships, it's like trying to choose your favourite child. So I would really encourage people, we have a wonderful partnerships web page, where you can see a lot of our current partners, and we'll be updating that soon so please do check that out.
Chandos:It's almost like you've you've prepared ahead, because you're answering the last question ahead of time. I love it. If there is any family led charities that are listening today, and that want to get involved, and they see, they look on the website, they see all those amazing organisations that are already part of it. How do they become part of that team and that effort to make change?
Phoebe Day:Great questions so they can either email me, which is Phoebe.day@thebraintumourcharity.org. What I would also say is, please don't be nervous or anxious if you're not sure exactly how you want to go about the partnership, if you just want more information. We really love to hear from families and we're here whether you need advice, support, we can introduce you to other families. If you just want to have a cup of we love an excuse for a cuppa, please do get involved and we would love to hear from you. And likewise, if anyone has any feedback or families have any ideas of what we're not doing, we really love new ideas as well so come on board and join the partnerships team.
Anna:That's great so what we'd like to do is just finish it off with a little bit more of a fun question. So if you were to describe family led partnerships, and what you do and the importance of them in just three words, what would those be?
Phoebe Day:That's a great question and I have to say they would be passionate, unique and pioneering.
Anna:Wow, that's great pioneering what a word that's brilliant. Thank you so much for joining us. Today, Phoebe, it's been a pleasure to talk to you and to learn more about the family led partnerships, I hope it's been good for you as well.
Phoebe Day:Thank you so much, guys. It's been a pleasure and I'd love to come back and share some success stories so thank you so much.
Anna:Yes, we'd love to have you back definitely.
Chandos:Whether you've been affected by a brain tumour or a family member or friend has the brain tumour charity here to help call 0808 800 0004, that's 0808. 800 0004 or visit thebraintumourcharity.org for more information.Thanks again for listening see you next time.
Sarah:We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@ thebraintumourcharity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness