TOFS Annual General Meeting (held May, 2026)

Duncan Jackson:

So like I said thank you for joining us. I can confirm with 24 participants we are quorate so therefore the meeting can go ahead. So Di, if we can go to the next slide please. There we go.

So just first of all a quick introduction to people around the screen that may be talking tonight or are actually part of TOFS and the trustees. Diane’s going to talk about the staffing as well part of her presentation. So obviously there’s me in the top lefthand corner.

I’m Chair. Laura’s now 25. Darrel’s now our treasurer and obviously two sons who are TOFS and then we’ve got T’oneill We’ve got Tamasine and Clare who are our current Council of Management. So thank you.  Di,  next slide.

Along with that I’m sure obviously a lot of you who have been here a long time and I’ve seen some names already and joining in who are ex trustees as well but obviously some of you will remember Gren and Christine who were made presidents of TOFS when they retired from being chair and part of TOFS. Spending many, many years that they actually gave to TOFS and of course our two celebrity ambassadors Tom and Charlotte who of course are dealing with OA/TOF children and Tom himself being a TOF obviously you know it’s great to have them on board and it’s great to have them shouting out TOFS and1 minute sort of bringing it to the fore with lots of people. So Di next slide. So apologies for absence. we’ve got apologies from Pat Ferguson and unfortunately from Roger Duckett who was a vice chair of  TOFS for a long time and did a lot of work for TOFS and sadly earlier this year passed away Leela Capila who is a great friend of ours and Sue Pandey. Next slide please Di.

So first of all we need to approve the minutes of the last meeting. So hopefully you were sent with the link at the minutes of the last meeting. I just need to check that we haven’t got any inaccuracies or we’ve missed anything. So if I can ask everybody to just check page one. I mean these minutes were checked by the trustees at the time to make sure that they were correct or as correct as we could be. if anybody’s got anything they want to say obviously put your microphone on and just speak and then we can then go through the pages. So page one anything from anybody? Page two? And finally page three?

Okay. So thank you for that. So we’ll take that as being the minutes have been approved. All I need is somebody to recommend that they are approved and obviously a seconder as well.

Darrel  Hill:

Yeah, I have I’m happy to propose them.

DJ:

Thank you, Darrel. I just need somebody anybody can approve can second them. Ideally, somebody who was at the meeting.

Tamasine Swan:

Happy to second.

DJ:

Thank you. Whoever that was, was it you, Tamasine?

All right. Thank you. It didn’t come up on my screen. So we’re now going to move on to our director’s reports. To start off with me talking just giving you a few comments as chair. Diane will talk bit a lot about what we’re doing for  TOFS because a lot of the work that she does and her team.

Dr. Caroline Love is going to talk about medical liaison. For those that you remember, in the past, it used to be Graham that did all that for us and he’s now retired as a trustee. But Caroline is taking on that medical liaison and doing a fantastic job for us. So, she’s got a lot to talk about.

Clare’s going to talk about fundraising and then Darrel will talk about the accounts. And while we’re talking about the accounts, before I forget later on, the accounts have been signed off by our external accountants. And the accounts when we get to that section, the full report including the accounts have already been approved by the trustees at a previous meeting which is our actual legal requirement and Darrel will obviously present on these. These accounts will be available to you once they’ve been submitted to company’s house. So next slide please Di. And the next one please.

So our three-prong strategy, we’ve had this strategy now for the last sort of five, six years and we are meeting later this year in like for next month or so to discuss the actual strategy and are these still appropriate for us? Do we want to change them? Are we going to fine-tune them? But at the moment, these are our strategies and obviously it’s always actually beneficial whatever we do for you as our TOFS members. you know, increased pastoral support with our staff in things like that, Facebook and everything else that we do, the adults, all the meetings, all the TLC’s get-togethers, all the cuppas and chats, the events, everything else. It’s all about raising support for you, raising awareness, and obviously trying to benefit everybody who’s related to somebody with to long-term benefit obviously raising engagement with healthcare professionals.

I think there’s a slide later on about posters and saying if you go into a hospital and you don’t see one of our posters, get in touch with us. We can send it to you or we can send it directly to the hospital to try and get it up. So you know we are trying to get the message out. And obviously our final one which we’re still trying to do we’ll talk about later is reduce that excessive dependence on to trustees. So we can be dependent we can keep doing all the things we’re doing but also then be not as reliant on actually trustees to do all all the day-to-day tasks.

Next slide please Di.

So I’m going to hand you over to Diane who’s come on the screen who is our CEO and has been for a while now and she’s going to talk to you about all the different things that TOFS do. Thanks Di.

Diane Stephens:

Everyone thank you for joining us this evening. I’m Diane Stephens. I am going to talk for about 15 minutes. I’m going to give you an overview of the support that we’ve offered members during 2025. I’m going to reflect on our achievements and how we performed from a membership perspective.

So first of all before I start I just want to introduce the staff team all of whom are on the call this evening and thank them for their hard work, commitment and dedication for TOFS. Top of the slide there you have Haley and Charlotte who joined us halfway through 2025. Sarah Winspear was doing pastoral support and membership support until May when she left to go off traveling and Haley replaced Sarah just in the middle of June. Haley looks after again all the pastoral support. She organises all the events, looks after the TLC’s and I’m sure a lot of you have perhaps spoken with Haley in the past. Charlotte joined us again on the same day I think it was in fact as Hayley again in the middle of 2025 and she joined in a new role which was created specifically for projects and was part funded by Stuart Investors. So you’ll hear a little bit more of what Charlotte does later on in the meeting. Some of you might know Peter. Peter has been with us for five years now. He joined in July 2021.Peter looks after all things digital and basically anything you see on socials Peter will be responsible for that, the website and much more alongside we said goodbye to Jayne Allitt whom a lot of you might know. Jayne was with us for 26 years in the role of administrator and she retired at the end of October and Adi joined us in November and has been fulfilling the role of office and fundraising administrator.

Obviously, as staff, we’re only part of the picture and we’re incredibly fortunate in having these amazing volunteers who took part in our subcommittees and our working groups. And as you can see, they’re involved in all areas of the charity. All of these volunteers have been personally impacted by OA/TOF. So, they make sure that the community is at the heart of everything that we do. And obviously with the nature of volunteering, these roles change. So we will have had various volunteers who’ve come and gone during 2025 and that the list that you’re seeing in front of you is where we are currently, but we’re adding to volunteers all the time. So if there’s an area that you have expertise in that you feel might be beneficial to  TOFS just get in contact with us or drop us, there’s a form on the website, send the form over to us.

We have a number of additional volunteers who work completely independently of the subcommittees and they’re listed here. They do really valuable jobs. Denise and Crystal, Crystal who used to work for us, they look after the birthday cards and we know that they’re really important to those who have younger TOFS. We have Derek who organises the raffle prizes both in sourcing the raffle prizes and sending them out to members as well and Allison who helps our adult to working group members facilitate the adult to cuppa and chats which are very successful. And then we have Heather who offers DLA and PIP support and because she’s tremendous experience in that area. Another area where which is really important to talk to you about and that is our TLC’s. So we have 12 local contacts and these are all parents who make such a difference. they’re all experienced parents and they volunteer their time to either organize TLC talks, organise get-togethers in their area and perhaps talk to hospitals and some of them are involved in additional ways. And these guys really go over and beyond to support members and raise the profile of OA. We’re just really fortunate to have them. So, if you’re a parent on the call tonight and you haven’t talked to a TLC, have a look at the members only section of the website because you’ll see their contact details and when they’re available and feel free to reach out to them. You’ll see on the right hand side of the slide, we have a list of current vacancies. So again, if you live in those areas and you want to know more, get in touch with Hayley and she can talk you through what’s involved.

This slide gives you just a touch of what they’ve done for us in 2025. Excuse me, just taking a drink. So we have three talk with TLC’s over the course of the year. And they were run by the TLC’s that are pictured there in green. There were 25 families supported during 2025 with those talk with TLC’s. We have another one coming up, a father’s perspective, which has proven to be very popular and the date for that I think is the 16th of June. So again you can register for all of those on the website at the moment.

There were five informal meetups over the period of the year which happened locally for members and 22 families supported with those and then we introduced the cuppa and chats and this is a format that we run actually for adults initially. It was a suggestion by an adult at a meeting we had in 2022 and those are really successful. So we had a pilot of just two of those in October and November last year and they were very successful.

So again, we’re running those throughout the course of this year and there’s one coming up actually in Tuesday night. Again, you’re not too late to register for that if you would like to attend.

And this is really sort of what we’re all about because one of our key objectives is providing support and information to help people deal with the day-to-day consequences of being born with OA. And in March last year, we organised a face-to-face seminar in Bristol for members to meet up make friends just have that thing off actually talking in person which is really valuable and get information and support from health care professionals.

And with 50 at that event and those photographs on that slide are all from that event. And since 2020 we’ve had largely a sort of online service for information events and that allows access to as many OA parents and adult TOFs and their families as possible regardless of where you live in the country. So you’ll see in the left hand side of that slide the list of the Q&As that we hosted over 2025.

Most attendees as you can see are from the UK but people joining us from all over the world in fact with people joining us from all over the world tonight and so we’re grateful for you being here. And then on the right hand side of the side you’ll see the cuppa and chats mentioned and like I say this was organised as a result of a request from a member who attended an adult TOF event and we’re really lucky because our adult to working group some of the members are there to facilitate these events and they take place every month. And again they’ve been incredibly successful. There’s an international one coming up at half 10 at night actually. So these volunteers are incredibly dedicated and that’s on Saturday the 13th of June. So obviously any adults can join that as well. It’s a place to talk confidentially, share experiences and basically build your support.

This slide is showing you the videos that we produced from a lot of those online events. So assuming we get permission from the speaker, Peter then turns the events themselves into a video and that then is available on our YouTube channel. So we had eight information videos added during 2025. Some of these were from the Warrington event the year before and some of them were for Bristol. So even if you can’t make it to a face to face event, at least you’re not missing out on the support because, if we have permission, you can actually watch the video then afterwards on the website. So go and have a look at YouTube if you haven’t had a chance to see these and there’s plenty more on there as well and that you might find beneficial to watch.

We continue to supply our information and support both to new members and associates to parents to carers to families and to health professionals and as well as the digital resources that I’ve mentioned.

We do that through leaflets, brochures, postcards and some of the things that you can see in this slide. So our books continue to be popular. We had 106 orders for those for the TOF book over the period of last year and 87 orders for the soft food recipe book and we continue to bring out Chew in the bottom of that slide. Ee in fact we’re working on edition of Chew at the moment. We bring out three editions of Chew every year and this new edition will be with you in about a fortnight or so. So there’s loads of interesting stuff in that.

The graphic in the middle of the slide is a photograph of our parent pack and we just introduced these a couple of years ago and again this was the idea from a TLC and these are sent out to hospitals in the hope that parents get to hear about  TOFS right from the word go when they really need us at that stage. And that image just tells you what’s inside those parent packs and those were sent out to eight different hospitals. Last year we had 52 requests from healthcare professionals who asked for us to access to our library and most of those were in the UK, 40 of them in the UK and 12 of them from abroad. And the bottom right of that slide is the poster that we designed for awareness week and our community is amazing because again from the awareness week this year, you really get behind it and it really does make a difference in terms of raising awareness. Duncan mentioned the poster earlier, but hopefully some of you will have seen either in surgical units or neonatal wards and hospitals. If you’re in your local hospital and you don’t see it, just get in touch with us and we can arrange to get it sent out to you.

And these are two really important resources that were new for 2025. So on the left hand side of the slide you will just see some pages from an OA to passport and this was made available on the website for members in May. It was created by Caroline who’s going to be speaking after me on the call with support from volunteers. Now these are just three pages. This is a really comprehensive document. it’s designed to be completed by both adults and parents of children so that patients and the representatives can keep an ongoing record of the impact of OAF and it could be really helpful in helping you communicate this to medical professionals or just anybody who’s unfamiliar with the condition. We only had 46 of those downloaded from the website in 2025. So, if you haven’t had a look at this yet, just go on to the website and put health passport into the search bar and have a look and do keep a record because it could be really valuable for you. The right hand side of the slide, this is an image of the new best practice standards and this is a framework which is written by the surgical interest group of the neonatal nurses association. This group is a multi-disciplinary network of nurses and allied health professionals who are focused on improving the care for newborn newborns requiring surgical management. So you know babies born with OF and we were really pleased to be involved with this framework and we were consulted all along the way. We helped review content a couple of our TLC’s T’oneill and Loris shared their story at launch and that was really powerful as well. And basically this is intended to aid the development and review of locally produced guidelines for all neonatal units. So a really important development and much needed and that was published back in May of last year.

Moving on now to our key form of pastoral support and that is our Facebook group. we have two groups. We have one for parents and one for teens and adults. Both groups continue to grow. Both of them are run by a team of administrators and moderators who are involved in doing that 365 days of the year. I’m in awe of the work they do actually to keep the group a healthy safe environment for members to gain support. We’ve over 5,333 at the end of December and we’re up now to almost five and a half thousand in the parent’s group. The adult group has continued to grow as well. We get over a thousand members and we continue to endorse it and it’s run mainly by Fay Barnes who is a TOF adult with support from a lot of these guys and also from Dr. Caroline Love.

And you might have seen recently just in January that we have gained the PIF Tick early in 2026. And this is a huge achievement for a charity that’s the size of ours. And so PIF Tick is the UK’s only assessed quality mark for print and online health care information. And to qualify for it, we had to undergo rigorous assessment which shows that we met 10 key criteria that examined how we created and test and share our health information. And this is Charlotte’s baby. So in December 2025, we submitted our new processes and evidence to PIF and we were officially awarded our certification in January of this year.

Moving on now and getting towards the end of my presentation. Just I’ve got about three slides here looking at how we fared membership wise because we are a membership organisation. So this slide looks at our members since we started tracking these numbers which was back in 2010 and you’ll see in 2010 on the right hand side of the slide with 37 members join us in that particular year.  And if you go right down to the bottom of that table, 2025 with 207 new members. So slightly down on the previous year. And this slide looks at how the cumulative effect of that growth over the last 15 years. So again 2010 we had just under 500 members, 470. By 2015 that had more than doubled. And now 15 years later, we have a membership base that’s over eight times as large as when we started tracking those numbers just over 15 years ago. So back at the end of December 2025 with 3,864 members, we’re now up to almost 4, 3,961 as of today.

And this one looks at where our members live. So if you look at the slide, all of the countries that are listed in blue, we have members in those countries. Now, as you’d expect, the majority live within the UK with 81% of members in the UK. And the table at the bottom in the green of the slide shows the top five countries. Our next country with the most members is Australia with 4% with 3% of members in the States, 2% in Ireland, and 1% in Canada. And then we’ve members as I say in 75 countries in the world.

Um this is my final slide and this just really looks at the category of member. And if you look on the left hand side of the slide you will see that the pattern very closely mirrors the previous four years. So generally we have two thirds of our members or thereabouts who join us are usually parents. 12% of members adult TOFS. 10% of members in this past year who are relatives a very small percentage just 2% who were told that they were likely to be having a TOF child and then we had 10% professionals. So thank you very much for listening.

I’m going to pass you on to Dr. Caroline Love now for the next part of the presentation.

Caroline Love:

Hi. I’m just going to briefly talk about what we’ve been doing in our subcommittee. The medical liaison group works with medical professionals to raise awareness of OA to engage in medical research as a charity and to work with medical professionals who do know already about OA/TOF to address unmet needs in our members.

Some of the research projects that are underway. As we’ve probably heard at our recent seminar, we’ve been involved with the GOSH tissue engineering project looking at the use of stem cells to develop an oesophagus. There’s a PhD degree underway looking at feeding issues for patients under a year old. TOAST has been underway for some years now, but it’s coming to the point where they’re actually starting to, they’ve recruited members and started the research proper to investigate antacid medicines with OA babies. OCELOT, which is reached fruition now, to develop a core outcome set for OA which will be useful in future publications and make them more comparable and CSOR which is looking at the outcome of babies born with a number of congenital malformations including those with oesophageal atresia.

We’ve been to a number of different conferences in 2025 both to raise awareness of the condition and to meet and network with people that already know about OA. So in the UK we’ve attended the British society of gastroenterologists, the neonatal nurse conference. Kate Tyler was invited to speak at the Royal College of Surgeons about rare surgical conditions and we also attended the VACTERL Patient Association meeting and have begun to work closely with them because of our joint members worldwide. It was a big year last year with the INoEA conference.  Which is a conference just about oesophageal atresia and we actually co-chaired some of the conference sections.

I attended the European Respiratory Congress and I’m part of the European Lung Foundation which in is involved with that. I’m part of the chronic cough meeting task force. Graham was asked to speak at the European Paediatric Surgical Association. And next slide.

Some of our activities through EAT. ERNICA we’ve been working with, which is the congenital anomalies for gastrointestinal anomalies, we’ve been involved in actually drafting papers on better transition and adult care. We’re involved with ERN Lung and I think our involvement in that is going to increase which is looking at Europewide respiratory care. Kate is working hard in eUrogen for the ARM side of things. Eurodis which is the umbrella organisation for rare diseases and again the European Lung Foundation. I was involved in organising a webinar for European physicians on respiratory problems and we’re wanting to do more on that in the meetings going forward. And finally, I’m a member of their chronic cough task force and chronic cough group. So, we’re trying to bombard them with knowledge about OA and TOF whether they want it or not.

And finally, this is something that was on last year as well. We we’re building relationships with medical societies and other patient organisations. We work particularly closely with Max’s Trust and the VACTERL Association. We work with EAT with international colleagues and all of our professionals and volunteers involved in the medical liaison society are either  TOFS themselves like myself and Kate or parents of TOFS. And that’s the end of my slides.

Clare Johns:

Lovely. Thank you Caroline. hello everyone and for those who don’t know me my name is Clare and I’m one of the trustees here at the charity and also chair of the fundraising working group and I’m just going to spend a little bit of time just to talk through our income lines and following all the fundraising efforts our members and supporters have done for us through 2025.

So the first one here on the slide is charitable trusts, clubs and corporations. So you can see this is showing compared to 2024 down 71%. However, Forester Trust did make a substantial donation which contributed to that 2024 total. So there isn’t actually any surprises there on the difference between those two years. And in almost every case, these donations arise because members have nominated us to their employers, clubs, societies. Something we are looking to raise more awareness of through 2026 to our members.

We’re also seeing regular year-on-year donations from the same sources and one of our most material supporters in this area was Inert Recycling and they donated £7,500 in 2025 and they’ve done so for three consecutive years now. So again, thank you for all these donations in this area.

The next one, individual donations up 47%.

So this is up again from 2023. So 2023 it was £2,600 and then to that £5,000 figure and then on to 8,000 for 2025. And although membership to the charity is free, we do ask members if they would like to make a donation when they when they join us and most of them do and a lot of them do as well. And a significant number of people also make regular monthly donations to us which we’re really grateful for.

Members organised events remain steady but it was a substantial increase from 2023 and these are more traditional fundraising activities. So they’re organised by members and supporters themselves. We support them with fundraising packs and vests and running t-shirts, hats, other items that they may need as well. And again, just to call out one of the fundraisers, Ross Jeavons. He did two substantial donations through Wickam Wanderers and My Town Choir in 2025, totalling just short of £4,000. But it’s a big thank you to all of our supporters who organize and undertake all these events to raise so much money for us.

And leaving legacies and donations is something we’re really grateful for as well. And this is something that has a special place in my heart for those people are thinking about  TOFS in such a sad time.

TOFS organised events slightly down 11%. So these are the ones just at the bottom of the slides that tots organize by places for and then reach out to our community to see if people will do the event to raise money for us. has that nice community feel to it as well.

The London Marathon remains the largest fundraising event for  TOFS and in 2025 we had 10 people that raised £30,700.

We used to have a Ride London cycling event but that’s no longer available. So in 2025 we offered the Peak District Ultra Challenge that raised £6,700 and that is an event we’ve promoted again for this year. So, if it’s something you’re interested in, just take a look at the website, look out for that one.

And you may have already heard, but every year we do a Teddy Toddle where our younger members and some adults as well raised money by doing a 5K walk or run throughout a week. Last year in 2025, it was supported by the Big Give who actually doubled up the donation to £5,000. So, the Teddy Toddle did result in a fundraising of £14,263.

It’s just worth mentioning though, you’ll probably see that my numbers aren’t quite adding up in this area. That’s because that double up donation is appearing under a different finance line for what it is, but I didn’t not want to mention a teddy toddle, especially with it raising that amount of money this year. And again, like you keep saying, you hear me say it a lot of times, thank you. So, we’re always grateful for all the people who put so much effort into the training and completing these events and actually thinking of doing them for us and raising that money for us as well.

The  TOFS books and goods. So, we have a shop platform on our website that offers books, merchandise, leaflets, badges, free items within there as well. And then income from the sale of those two books which have been published by TOFS has remained steady compared to the previous year.

And just the last one before we go on the next slide, we’ve got fundraisers like our lottery, raffle, Christmas cards as well. So this was down 27% compared to the previous year. We do continue to promote that lottery which is run by a third party, Your Charity Lottery. We have around 160 members playing and winning prizes on a weekly basis as well. So the draw is weekly. we have an annual raffle that was also a success and supporters won some great prizes and again we offer those Christmas e-cards which went well and other than the raffle there’s really little effort with us organising these events. So although they are down year on year, it’s something we will carry on promoting because of that little effort there as well.

But actually we might take a look at these in 2026 and see if we can refresh or revamp them in some way as well just to try and drive more income coming into that area. And then just going on to the last slide, just looking ahead for 2026.

I’ve already talked through what we’ll be looking to refresh and focus on. It’s also worth mentioning when it pops up in a minute. We’ve introduced skydiving into our plan to promote this year as well. So, if anyone’s interested in looking to do that, there is more information. It’s the first year we’ve been promoting it and we’re really excited about that one.

But finally, again, I just want to say a big thank you to you all to you all on the call today to all our members supporters. Without raising this money for us, we wouldn’t exist. So, big thank you there.

Okay. So I am going to pass over to Darrel now for the next slides. Thank you.

Darrel Hill:

Good evening everybody. So first part I’ll be doing is presentation of the accounts and my report as part of it. Next slide. Thank you. so the big picture is it was better than the budgeted outcome. we had planned to spend a lot more than anticipated income. basically using our reserves to do this. The hope being that the income will be maintained and we’ll slowly drop down to a reserve figure that fits more in with the charity commission and where they’d like to see us as we’d been very successful over the few years. So this fits in with the 2018 strategy that’s put in and then updated in 2021 regarding our finances. So the expectation was that we’d be spending higher and income a little bit lower. So the budget was a deficit of £57K for the year. However, the actual income the outcome was much better with a £16.5K deficit. So you can see that was significantly better than what we’d actually budgeted for. So we’ll go into the detail of that next page.

So spending up a very small amount. and I do mean a very small amount. Sorry I should have changed that. Spending was it’s down a little bit. Should have changed the top bit. we had the originally budgeted for £228,000 but actually only spent about £191,000. So you can see on the chart where we’ve gone since 2014 with just around £50,000 expenditure to now looking at where we are around £170 to £200,000 total expenditure. The run rate on that excluding all the one offs is around the £150,000 though. Next page.

Okay. So the main expenditure obviously staff’s cost grew slightly. Part of that is obviously on the addition of a new role. But we that is also being funded as you’ve been made aware partly by the funding we received in 2024. So if you look at that cost though over 50%, 55% is on pastoral support and exchange of information and 16% on the medical liaison. On top of that you have a lot of liaison and effort from trustees and volunteers which has no cash cost which was obviously discussed earlier. So the other expenditure thank you is sending as already mentioned the medics to an Ania and medical liaison which was £6,000. Most of the travel in UK it was within there, there’s a little bit abroad but not an awful lot of it. And then obviously we had to buy a new computer and a printer for the staff costs. And in terms of or no travel very little because now obviously we use mainly Zoom and Teams to communicate with people. Income again a good year, slightly down from 2024 but nothing that I’m concerned about because actually that difference was based on the one-off that came in the year before. So it’s where we should be. Already been mentioned is the match funding and Ross Jeavons’ his donation. The lead fundraisers for the London Marathon were Mark Keane and Jack Wright as you can see there.

However, one thing that has gone down that is and will go down again is the interest income. Two reasons for that. One we’re pulling from our reserves and also the interest rates have gone down so again we will only get we shouldn’t be getting as much again for this year unfortunately that is the way that the accounts are going to be and the banks are going. But one thing to be aware for everyone is all income almost all income is from the OA/TOF community and people that are linked with it.

Okay, so the year end position we’re still quite strong. We’ve got £297,000 well near enough £298,000 in net assets at the end of the year. And all held in UK deposit accounts which are protected. So it’s multiple banks going towards the maximum on each bank to make sure that we are protected. We can split that out into designated funds for medical research, some in for the TOF book fund that’s £23,000 and then £15,000 for the mental health support that was given from match funding that we’ve locked in and then the £248,000 in the general fund which the accountants have approved.

So going forward into 2026 we already set the budget in January and I will be doing a review in July with the financial committee. Planned spending we’re looking at increasing up from 2025 to £194,000. And an income of 144,000. So we’re expecting it to go down a little bit or were expecting it because of a loss of places for London Marathon and various others. However, I’m not convinced it is going to go down as much as originally thought because actually London Marathon has done particularly well this year considering it was only four runners. There’s no major conferences that have been planned in for 26. but we are still planning to a deficit of £57,000. Significant part of that is down to the cost of the book and spending on the restricted funds for counselling. It’s easily forwarded for the year. But you know, going forward into 27, then we’ll need to pull back and line ourselves back up so that we sit on a neutral position. So, you should see more fundraising requests coming forward. Next page.

Any questions on that?

DJ:

Or any questions on anything any of the presenters have obviously said tonight.

So if you have please raise your hand or turn your microphones on and obviously ask. I’ll give everybody about 20 seconds and if not we’ll move on.

Okay, thanks Di. If we can go to the next slide please.

So thank you to obviously all our presenters for the information that they’ve done. Darrel, I just need to pass back to you because this is all this is for you.

You’re on mute, Darrel.

DH:

That’ll teach me. Recommendation is from myself and the trustees that we retain Lemans as our accountants. Are there any objections to this proposal? We’ll take that as I haven’t seen either a hand or any question as a no and we will continue with Leman’s going forward. Thank you.

DJ:

Right. Thanks Darrel. Next slide please. I apologise in advance. I am next door to a brass band rehearsing which I’m going to go and join shortly once we finish the meeting. So if you hear this music coming in the background that’s what it’s from. So we’ll carry on with the meeting.

It’s down now to the election of trustees and our articles of association say that every year a third of the trustees should stand down and stand for re-election and obviously it gives them the opportunity that they may want to join rejoin and be re-elected or obviously they can stand down like some trustees have done in the past. So Darrel and Clare are obviously on the rotation this year and I’m very happy to say that they want to carry on being trustees and obviously as the rest of the council management we’ve certainly accepted them but obviously tonight is the formal part of electing them as trustees. And Kate had this a short period of time away from us as a trustee and now has come back to us and she’s doing some phenomenal work again. So very pleased to welcome her back on as an additional trustee. So unless there’s any objections, I’m going to officially say welcome back to the team and obviously we’ll keep working forwards, moving forwards.

Okay, thanks Di. Next slide, please.

This time last year Drew was in Australia and only had a short time with us but for personal reasons decided to step down from TOFS and did quite a few changes in the time that he was here. We thank him for his time that he gave to  TOFS and obviously to Graham who we talked about before in the past but who has done a huge amount for TOFS both locally, nationally and internationally and every time I seem to speak to him he always seems to be having something new to do for the NHS. All I can say is thank goodness he’s retired because otherwise he wouldn’t actually have time to actually go and do all the things that he is doing now currently. But I mean the one thing we can always guarantee is he will champion TOFS in any work that he’s doing in any organisation. So to both of you Graham and Drew, thank you for all you’re doing and thank you for all you’ve done. Next slide please.

So any other business? Nobody’s actually emailed anything in or requested any. So hopefully there shouldn’t be any. And normally AOB should be raised before the meeting. So unless somebody has got anything which is really urgent. I’m going to say can we move on to the next slide.

Okay. Thank you Di. And obviously as it says on there the annual report will become available once it’s logged with company’s house. Di’s already talked about this in her slides and about the various things about people can do and Clare’s talked about it in terms of various other things. So as you saw from the slide of trustees Kate’s come back on that takes us to 6 we are still short of trustees. So if you have got a few hours spare every couple of months to meet us for a meeting a lot of them we do now on zoom so we don’t have to travel anywhere. We would love to hear from you. Particularly if you’ve got a particular set of skills like secretarial skills or anything like that or a lawyer’s brain or anything like that you where you think actually I could offer something to TOFS or even on those committees that Di showed you where we’ve got the all the different subcommittees, you know they don’t meet that often. So if anybody’s interested and wants to make a difference please get involved and we’ve got all our volunteer vacancies as well the medical liaison, pastoral support, Chew. Di is always looking for people to help her, fundraising, TLC’s, new book.

If you want to raise money for us London Marathon we may have a bump in the year next year. there is talk going around at the moment that there may be two days of the London Marathon next year so it may be a one-off so we may be able to even get more places. so if you know any other more people once we find out we’ll celebrate it very loudly that we’ve got some more places going but if you don’t want to run a full marathon you can do the half marathon the Great North Run or you can do an ultramarathon. I think I’m a little bit past that one now. and the Royal Parks Half marathon. So please if you’re interested get in touch with the office and get back to us. We’d love to speak to you in the future. Next slide please Di.

So up and coming event parent cuppa and chat which is next Tuesday. Di’s already mentioned to that and then we’ve got TLC local group meetups. Caroline and Alan have got the picnic in the park on the 20th of June. Sarah in the southwest is doing Ronald McDonald house meetup and then again in July at the Blue Ball Inn Exeter. So please get in touch register for those.

It’s always great to see lots of people at those events and it’s always great actually just to talk to other parents about what’s going on, what’s happening, what’s working for your child, what’s not and just actually having somebody there to talk to actually who understands what all we we’re going through at that moment in time.

Adult cuppa and chat Saturday the 13th of June which is at 10:30 because of course it’s an international meetup. So it is late but at least it’s on a Saturday night and then Bruce and Richard are doing the father’s perspective talk about OA/TOF. So obviously please again log in for that tune in for that and register for that because it’s always great if you’ve got people there to talk to and obviously take part in the conversations.

Next slide please Di. So the only thing that remains for me to do is to thank a few people.So thanks to all our staff for all the hard work they do and even our new members of staff who are now starting to take on their roles and really starting to run with them. Thank you for everything that everybody does.

Our suppliers. So people like our accountants who do lots of work for us. Caroline who is doing an absolute sterling job with the medical liaison group having taken over from Graham and picked up a huge amount of work from there and she’s actually creating more work as well and doing another huge amount there. So thank you all you do for that all our TLC’s volunteers from committee members. Everybody there you know it will be amazing to see more people on that screen but you know thank you to all those and obviously all our trustees who work alongside me and everything that we try to do for you as members and finally thank you to you because without you TOFS wouldn’t be around and, as Darrel points out, most of pretty much all our money comes from you as our members. So without you, we couldn’t do all what we do. We couldn’t do everything that we managed to be able to do. So thank you for everything that you do.

Next slide, please.

So at 1954, so 7:54, I’d like to say thank you for attending and hopefully we’ll see you soon at one of our other events and we’ll get a chance to meet up then. So thank you. Stay well and hopefully we’ll see you soon.