RECORDED Wed 27 Nov 2024
SUMMARY KEYWORDS
neurofibromatosis, complex health conditions, school connections, genetic condition, learning difficulties, mental health, early intervention, delayed diagnosis, family support, school resources, individual learning plans, sensory processing, physical challenges, teacher education, community awareness
SPEAKERS
Megan Gilmour, Ruth Lindsay, Meredith Fanneli
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. This podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:46
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges, and today on Live & Learn, we have Ruth Lindsay and Meredith Fanelli.
Ruth is Head of Support Services at Children’s Tumour Foundation. She is an experienced case management and community development professional with experience working for community organisations and in publishing.
Meredith is a National Support Coordinator at the Children’s Tumour Foundation. She has qualifications in speech pathology and a professional background in acute services, patient advocacy, service development and health professional education and training.
Welcome, Ruth and Meredith, we’re so excited to have you on Live & Learn.
Ruth Lindsay 01:43
Thank you. Thank you for having us. It’s wonderful to be here. We love sharing our work and particularly our journey through education and supporting children. So, thank you.
Megan Gilmour 01:53
Our absolute pleasure. So today we are here to talk about supporting school connections for students with complex medical and mental health conditions. So, we’re going to dive right into the questions.
So, tell us how neurofibromatosis (NF) impacts kids and why it’s something every Australian needs to know and care about. And I should check that I said that correctly.
Ruth Lindsay 02:19
You did, well done. Neurofibromatosis is a very tricky word to say, as well as being tricky to live with at times, that’s what we always say as well.
What we’re talking about today is neurofibromatosis type 1, which is a condition that can cause tumours to grow on any nerve cell in your body. But it’s not just about the tumours in childhood, it’s a lot to do with those learning challenges that children face, and it can impact on any organ system in your body.
So, it is a really complex condition with a big, long name. I think we’ll probably call it NF today, just to make it easier for everyone. And then if people out in the community hear the word NF, they’ll know – ‘I’ve heard of that – that’s that condition with the big, long name’.
We would love everyone in Australia to know about NF, that’s really our mission, I think. One of our core missions is awareness, because we believe that the more the wider community understands about NF, the less the NF community has to explain themselves. So, I’ll let Meredith give you some information.
Meredith Fanneli 03:29
So, NF is a genetic condition. There are a couple of different variations of NF, but we will be talking today about neurofibromatosis type 1. There’s another one now, just recently renamed to be called NF type-2 related Schwannomatosis. And that’s not a condition that’s found very commonly in children. So, it is an issue for a small proportion of people who are under 18 and still in the school system. But fortunately, it is rarer – it’s about one in 40,000 people, whereas NF1 is one in 2000 people. So, we’ll focus on that today.
So, NF1 is a genetic condition that is inherited 50% of the time from a parent. So those parents are watching these kids like hawks, and they’re diagnosed pretty quickly, because the parents know what they’re looking for. For the other 50% of the population, they’re the first person in the family with NF and so the diagnosis can take a long time.
We’ve just done a Social and Health Impact Assessment Report, and 400 people responded to that. And out of that, some of the data showed that NF takes on average, four years to be diagnosed. The first sort of signs of NF are that kids will get multiple café-au-lait spots, so they look like birthmarks, but they’re not technically birthmarks, because they weren’t there when the child was born. Some are, but usually they appear in the first few months of life.
And if you get a GP or a pediatrician who really knows what they’re looking at, then they can diagnose NF really quite quickly. But a lot of people just think, ‘Oh, they’re nice little birthmarks aren’t they cute’, and the birthmarks or the café-au-lait macule don’t actually cause any harm at all. It’s just a diagnostic character.
So once somebody is diagnosed with NF then they need to be monitored very carefully. So, NF is a tumour predisposition condition, which means that there is this propensity to develop a tumour on any nerve cell in the body. So, if you think about that for a minute, it means no two people are the same. We even have twins who are very different.
So, we say that NF is like a snowflake in that everybody is different. So, everybody’s journey, everybody’s physical manifestation of NF, is going to be different. Not everybody gets the tumours, but the most common thing of our work is the learning difficulties and the social impacts of NF.
So up to 80% of our kids will have learning difficulties and behavioral problems like executive functioning problems. So that means, you know, poor planning, poor working memory, poor organisation, and up to 40% will have either a diagnosis of ADHD or ASD or both.
And so, there’s a lot of sensory processing problems. These kids are overwhelmed in classrooms. So, besides all the learning stuff, there’s different physical things. So up to 20% of our kids will have an optic pathway glioma, which is a tumour behind the eye, which can affect vision and cause early onset puberty.
A lot of them have bone problems. We have 6% of our kids will have some sort of scoliosis or bone abnormalities. Some of them do get tumours in other places where they’re called plexiform neurofibromas, and they can be really quite large and disfiguring.
And the other thing is that most of them have some sort of pain, whether it be general, generalised tummy pain, headaches, all of our kids seem to have difficulty with balance, coordination, muscle tone and fatigue. So, you put all of that together, you’ve got a little person in a very big, noisy, complex environment who’s really struggling.
Ruth Lindsay 07:49
And then you imagine the ADHD mixed with that muscle fatigue, and so you have kids who are expending all this energy, and then complete exhaustion will set in quite quickly, and that will lead to meltdowns and so really, for us, getting teachers to understand that a child is not being naughty and is not misbehaving, it’s really they’re having physical and emotional impacts that are affecting their behavior.
I think that’s a lot of the work we do with schools in particular, and even with parents who might not understand that. You know what’s going on with your child, but I think the more knowledge you have about the condition, the more you can understand what’s happening with your child.
Megan Gilmour 08:36
Thank you for that extensive sharing of information there, and we can just – right out of the gates – hear why this is so important, and every Australian needs to know and care about it, and as you’ve identified, and we’ll get into this a bit more, the impact this can have on a young person’s life.
Meredith Fanneli 09:00
Can I just interrupt you for a second, because these problems don’t go away in adulthood. So, people have these difficulties through their life and their workplace as well. So even though we’re called the Children’s Tumour foundation, if there’s any parents out there who know any adults with NF we can help them too.
Ruth Lindsay 09:19
It’s most commonly diagnosed in childhood, but we support everyone.
Megan Gilmour 09:25
A really important point to speak about. And also, I think once we get into a bit more about the school journey, in these conditions that go on into adulthood, those impacts can go on forever, including with mental health issues and all of that sort of thing as well, which is why we need early intervention on all fronts.
So many people probably assume things about NF. What’s the million-dollar question you get from parents or loved ones when their child experiences or is diagnosed with NF?
Ruth Lindsay 10:11
I think the million-dollar question and the complexity around NF is there’s no clear pathway of what will happen to your child. I think for me, it’s that fear and that not knowing – okay so you’ve been given this diagnosis, and now what?
As Meredith discussed that watch and wait. There’s really not a nice little pathway of well, this will happen with other conditions, this will happen at this point of time, and we’ll be able to do this intervention, or you’ll have this medication at this point.
With NF, none of that is clear, as we’ve stated, in every single person, it’s different. And the complexity of being educated about the condition is also, the more you know, the more you think ‘will that happen to my child?’ So, there’s that double edged sword of I want to know, but do I want to know?
So, there’s a lot of fear and complexity that comes with the diagnosis. And I think our main thing is – know that there’s a whole community, and there’s our organisation, the Children’s Tumour Foundation, there to support you.
So, if you’re having any thoughts or any worries, come to us and we will meet you where you are on your journey. So, we won’t terrify you with a whole lot of stories about what may or may not happen. We will listen to you, and we will help guide you with any questions you might have. So, I think – there’s not just one nice answer to that question really, but I think the fear and uncertainty is the big thing around NF that makes it so complex.
Megan Gilmour 11:57
Yes, and I want to acknowledge your work and your advocacy and the brilliant things that you’re enabling and doing out there in the community. We had this chat before, before we recorded, just to acknowledge the work that goes on at the coalface there that is just so critical for families and people in these circumstances. So, from us to you, thank you.
Ruth Lindsay 12:26
Thank you for listening to us, it’s so much appreciated. As you can probably hear, we love to talk about the work that we do and the impact the NF has on people, and we don’t speak on behalf of the NF community, but we like to think that we do use our quite big voices to share insights and stories and to really lead to positive action, to create change.
Megan Gilmour 12:50
Yes, and then, what is the most important thing that you want these families that you provide services and support to, to know, throughout this journey with NF?
Meredith Fanneli 13:05
That they’re not alone. It’s as simple as that. They’re not alone. They feel like they are, particularly if they have a child who has been – what we call – a spontaneous case, so they’re the first person in their family that has NF, and we run family camps around the country, and we do a monthly online support group, and we find that that is so important.
Like earlier this year, we were in Adelaide, and there was a mum, young mum, who lived a couple of hours out of the city, and she said, ‘You know, I feel like I’m alone in an ocean of darkness’. And nobody she’d ever met had heard of NF, no one can remember how to say it, and they just asked a million questions.
And she came to a day where there were about 60 people with NF and she said, at the end of the day, I found my tribe, and not long after that, we got a photo of her and her little boy at the zoo with another kid.
So, we’ve got hundreds and hundreds of stories like that, of people being able to connect with other people whose journey will not be the same, as we said, it’s all just so different, but they have a sense of belonging and a place that they can go.
Our camps are a safe space to ask questions if someone’s facing surgery or they’ve got a particular medical condition that they want some support with. We can connect them with other people around the country.
We have this informal but very effective peer support network, and we enact that every week to make people feel that they are not alone in this journey, they can talk to us,but having that other sounding board with lived experience is very, very important. So that’s a very integral role to what we do is make people just feel that they’re not out there on their own.
Megan Gilmour 15:16
Yes, probably four of the most important words put together, ‘you are not alone’.
And having – not in this particular area – but my own lived experience, it is just so critical to be with people who you might not ordinarily mix with in life, but they know exactly what you’re going through, and there’s so much you don’t have to explain.
And in some ways, you can talk about normal things rather than – you know – it can work both ways. You can get that conversation of understanding, but you can also not necessarily have the conversation knowing that they already know and understand.
Ruth Lindsay 16:04
It’s being yourself without having to get that outside advice that a family member might. I think within your own family, it can be, ‘well, I’m trying to fix the problem, so I’ll give you all my advice.’ Or your friends, ‘oh, he’s still talking about that, but they were just in hospital for that isn’t that fixed yet?’.
So, it can be a lot of those conversations you have with the community around you that doesn’t have that understanding, which leaves you having to explain yourself a lot, or then not wanting to have to explain yourself, which can be isolating in itself.
So having that sense of a village and a community that I don’t have to explain it, when people phone us, that’s really quite often, what we hear reflected back is, I didn’t have to explain, you understand without even having to say it. And they’ll say, ‘but how did you know?’ And how did we know? Because what lives inside us is hundreds, possibly thousands of other people’s lived experience.
Megan Gilmour 17:07
Yes, it’s just such an important part – it’s the first part of everything else that comes next, isn’t it? Just having that feeling of safety and also being with people where you’re not being re-traumatised over and over again in an experience.
So, we’d love to know if you’re willing to share what brought each of you into the world of NF. We could kick off with you first, Ruth.
Ruth Lindsay 17:37
Well for me, it was a job ad – part time – near my house ‘Well, that looks good!’. But what I discovered from that, and I don’t often share this journey, but while we are talking, I may as well.
I did Google NF, and since that time discovered… I grew up in Australia, but I have family in Ireland, which is a long way away, so we weren’t really connected in that everyday kind of way. But I said to my father ‘look, I think your brother might have….’.
And then actually, since that time, I discovered that my grandmother had NF, and I have an aunt who sadly passed away from breast cancer, which was, as you know, NF is a cancer predisposition gene, which is what makes me very passionate about the breast cancer education that we do.
So, I didn’t know that I was personally connected to NF, but as with all things NF, everything, it’s always a surprise, and you’re always learning. So, I really am quite passionate on a personal level as well
Megan Gilmour 18:52
and that professional joined up with the personal?
Ruth Lindsay 18:55
It came by accident, but I found a true personal passion and mission.
Megan Gilmour 19:01
Wonderful. Meredith, what about you?
Meredith Fanneli 19:03
Well, same sort of thing as I said before, I was looking for a new job. I had worked in a family business for a while, and my previous qualifications were in speech pathology and then community health.
And so, when we sold the business, I thought, ‘Okay, well, now what am I going to do?’ And I had done some case management before. I had done some policy work. I’d done some grant work. So, the job ad again, 10 minutes down the road, part time, I could do this, but what is this NF?
And so, we met the CEO, and yes, she just asked us if we would be happy to job share. And we complement each other really well. So, we do work very well together. There’s two other people in our service, support services team, and yes.
So, we’re four part time, people who try and cover the entire country, but we’re constantly evolving. So, as Ruth said when we first started, there weren’t really any resources. Now we have a library that we’re proud of. We do the presentations to schools if we’re asked. We do a lot of work with NDIS, as I said before, and we also work behind the scenes.
So, we have done trips to Canberra and had Zoom calls with some of the politicians and people from the NDIA and we’re really trying to work with all facets of the NF community. And last Friday, we held a meeting in Sydney with 40 doctors and nurses and geneticists from around the country, and we facilitated this model of care workshop to try and work out how we can get more equitable care around the country.
So, whilst our patient advocacy is our core business, there’s a lot of stuff that we’re doing outside of that, and I think both of our backgrounds have sort of merged together to make us a pretty formidable team with Lisa and Terry who work with us as well.
Megan Gilmour 21:26
Amazing. So, knowing all that you know, and that’s obviously a lot, what’s your biggest hope for kids with NF, their families and loved ones when navigating NF?
Ruth Lindsay 21:42
Again, it goes back to that they’re not alone. That is it really, and to know that there’s incredible people out there doing incredible research who really want to make change.
I think it can feel quite isolating, and we maybe have the advantage of knowing all these brilliant clinicians from around the country, so we’re not just seeing that one person. We are seeing all these incredible minds who are really trying and working hard to make change. And we sort of see our job is bringing them all together to make sure that change can happen.
So really, just knowing that there’s people who’ve got your back, I think that’s – and it doesn’t happen overnight, it doesn’t, sadly. We do have magic wands in our desk, but we haven’t quite got them to work…[laughter]
Megan Gilmour 22:31
I know you’ll do it [laughter]
Ruth Lindsay 22:36
It’s a process. I think, it’s really, just knowing that there are people who care and people who are always willing to listen and that at any time, if you need to pick up the phone, whether that ‘oh, I wasn’t sure if I should ask you that question’, what we always say is, ask the questions. If we don’t have the answers, then we know the people who do.
Megan Gilmour 22:57
Yes, you’re translators. What about you Meredith? What’s your biggest hope?
Meredith Fanneli 23:09
I hope for a day when NF has the same sort of awareness across the country as CF, for example, and the same sort of funding. So, we have managed to get some funding for our organisation, but also for research, and that’s been fantastic and a career highlight.
We also played a small role in getting a tumour treating drug on the PBS this year, which was just fantastic for me. I felt like that was one of the best things I’ve ever been involved with. So that’s a real treatment for our kids now, because these tumours, the big ones that this drug targets, they’re inoperable.
So, for me, there is a real inequity in what NF gets in terms of awareness and funding. And I would like to see us later on having that much awareness again.
Megan Gilmour 24:17
Yes. Well, congratulations on that. That must be very edifying, and also just such great news for families as well. What are some of the common and perhaps frustrating public misconceptions about NF and how have you seen these impact kids and families?
Ruth Lindsay 24:41
I think in childhood, because it can look like nothing, you know, like ‘this mum is always talking about their child and their NF, but they look fine to me’. So, I think that really can be a challenge for parents when you have all this complex social, emotional and physical stuff going on, but it’s just not so clear to that person in front of you, or to that teacher or to that family member. I think that can be one of the biggest challenges.
It’s like a hidden condition in childhood, because generally most people don’t have the visible tumours, so, but there’s a lot of neurological things happening, and it’s really – how can somebody else understand that fear that a parent has? You know, only really that parent is going through those fears and challenges within themselves, and then not everybody wants to talk about that all the time.
And I think that’s one of the biggest challenges with NF …in a classroom, it’ll be, ‘oh, well, they’re just a naughty child, or they’re just this, or they’re not trying hard enough’. Or, like, how do you see muscle fatigue? You know? But it’s a real thing.
Megan Gilmour 26:06
It’s the invisible illness.
Ruth Lindsay 26:07
Yes, yes. So, I think that’s one of the biggest challenges.
Meredith Fanneli 26:11
It’s so multi factorial, though. There’s some research going on at the moment at MCRI [Murdoch Children’s Research Institute] in Melbourne, and it’s so simple, but so effective. Our kids are trialing an assisted listening device. So, they have an earpiece, and the teacher has a microphone, and that in itself has made such a difference to the kids in the trial.
The anecdotal evidence that we’ve heard so far, because the results aren’t out yet, are that the kids are less fatigued, their academic scores are skyrocketing, that they’re starting to get more invitations to social play dates and things like that, because they’re not just so totally overwhelmed and overstimulated in a classroom environment.
So, I always say my favorite thing about camp is to see kids with NF just instantly connect and run off together, and I know that these are kids who are not necessarily having a fine time at school and at our camps they’re just so courageous and supportive and empathetic, and it’s a beautiful thing to watch.
Ruth Lindsay 27:24
And kind and funny and caring,
Megan Gilmour 27:26
Yes,
Meredith Fanneli 27:28
And tough, so tough.
Ruth Lindsay 27:36
We think we have the best job in the world to be connected to the best people. I think that’s what we wish everybody could see that.
Megan Gilmour 27:41
Yes, and it’s a shout out here to these children and young people. You know, there’s a lot of talk out there about kindness and empathy. There’s a lot of talk about teaching kids grit and resilience, and the kids who we work with, the kids who you work with, I mean, these are the gold standard of grit and resilience, and most of us could learn a lot about that.
Ruth Lindsay 28:11
I know we do every day.
Meredith Fanneli 28:12
I was walking around camp last weekend going, geez, my foot hurts and I thought ‘ah shut up!’
Megan Gilmour 28:19
Yes! That’s what I tell myself on hard days, and there are many hard days, it just doesn’t even compare, you know? And that’s what helps me to get on with things, is just like what they go through.
Meredith Fanneli 28:33
We’ve got kids who have multiple surgeries and general anesthetics. I was putting a band aid on a kid who fell off something or other at camp the other day. And I said, ‘I’m just going to squirt the stuff on it, and it’s going to hurt a bit’. And he just looked at me and went, ‘do you know how many needles I’ve had?’ [laughter]
Megan Gilmour 28:53
Yes, like toughen up lady! [laughter] They are incredible, they really are.
Ruth Lindsay 28:58
We run teen and young adult groups as well, and the amount of nurses and kindergarten teachers, you know, the really kind, caring, compassionate jobs that these children or young adults want to do, and nurses, teaching assistants – all these jobs that are such an integral part of our society – it’s these beautiful young people who are doing them and want to do them because they’ve had somebody be kind to them, or they haven’t had somebody be kind, and they want to show that kindness. And it always amazes me that people are willing to share their own kindness and knowledge.
Megan Gilmour 29:42
Yes, absolutely. And I can hear that there’s a lot of young people out there right now living with NF. Most people probably haven’t heard of this even, so any number upwards of zero, half of them is on the mark. So how many Australian children and youth are living with NF right now?
Ruth Lindsay 30:11
There’s 13,000 Australians living with NF, and it’s estimated that every three days there’s a child born with NF. So, it’s not an insignificant number. As far as children, we don’t have exact breakdowns on that data.
Meredith Fanneli 30:27
No. But if you do the stats, you can extrapolate the numbers. It’s about one in 2,000 kids are going to have NF1, and as I said before, about one in 40,000 will have NF2.
Ruth Lindsay 30:39
And when we hear, as Meredith stated before, about parents being diagnosed, when their child is diagnosed, we even think that it probably is a larger number, just they’re not being counted.
Megan Gilmour 30:51
Yes.
Meredith Fanneli 30:51
The other thing with NF is that there are no differences in terms of gender. So, it’s a 50-50 split between males and females, and there’s no ethnic propensity to having NF, like, you know, some conditions are more prevalent in certain populations. That’s not the case with NF, it’s the same throughout the whole world.
Ruth Lindsay 31:14
So, it’s an equal opportunities condition, really, which means it has impacts on every community, which is why everyone should know about it.
Megan Gilmour 31:24
Yes, this is why these conversations are so important, so that we can drive change forward on a number of fronts and get more awareness. I think that’s got to be the first part of empathy and understanding, hasn’t it? Just to know and be aware.
Is there a risk of delayed diagnosis, or are most cases of NF picked up easily? So, you answered this earlier. Would you like to add anything to that answer?
Meredith Fanneli 32:00
Yes, so as I said before, on average it’s four years for somebody to be diagnosed, but often we have parents ringing us saying, I’m quite sure that this is what my child has, but the GP or the pediatrician won’t give me that label. And it’s often the case that there are diagnostic criteria, and a child might have two of those, but they need something else before the pediatrician’s willing to give the label.
But the thing is that parents, and we often talk to them about trust your mum gut, usually keep going back, keep being the squeaky wheel, because they’re noticing that their toddlers don’t have the same sort of developmental milestones as their older children.
So, it’s those sorts of things that are often dismissed as ‘No, no, they’re fine, they’re just maybe a little bit delayed, but they’re all right’. But we are constantly giving people that sort of little push of encouragement to go back and keep asking if you think that you don’t know if you’re not getting the answers you want.
But I guess with the delayed diagnosis there is some physical risks in terms of like those tumours behind the eye that I talked about. Most of those are just monitored, but some of them do need intervention really quickly. And so, there’s a risk there that children can have permanent visual loss if those tumours are not picked up.
But there’s also the whole delay in getting early intervention and having, you know, speech OT [occupational therapist], physio, all those things that happen in the early years, getting the ASD diagnosis.
A lot of that happens much, much later, and we get parents saying to us all the time, ‘geez, I wish I knew about you guys’ years ago, because you could have helped with NDIS, or you could have helped with school, or we could have come to camp.’ And so, there’s also those social risks that go along with the physical side of it.
Megan Gilmour 34:22
There’s a lot of lot of things going on there.
Ruth Lindsay 34:26
NF is complex, it is.
Megan Gilmour 34:28
And to add to the delayed diagnosis, well, I’ll put it another way, you’ve also mentioned the fact that even when diagnosed, it’s an invisible or can be an invisible illness. So, imagine without a diagnosis but symptomology.
Ruth Lindsay 34:51
Yes, and if you’ve got a mum who says, ‘I know there’s something happening, and nobody’s listening’, that leaves you in a really lonely place
Megan Gilmour 34:59
Or being disbelieved
Ruth Lindsay 35:00
And leaves your child at a disadvantage also, if they’re not able to access those early intervention services.
And with starting school, I think there’s a real positive in having the school understand the child’s needs and understand what NF is, which is why we’ve created all these resources. Like, if there’s that communication from a parent to the school and the school doesn’t have to point out this child – it’s not that this child is any different to any other child, because they’re not. It’s just if you can target those simple strategies. Is, and the school has an understanding of what NF is, it makes the child feel more included.
Meredith Fanneli 35:44
Yes, when we first make contact with a family, we give out what’s called a health information kit, which contains all of the resources. But it’s tailored, so it’s not very fancy, it’s in a ring bound folder with plastic sleeves, but that way, we can put in the information that we think is relevant to that family at the time.
So, if there is a parent with NF we’ll put in some adult stuff as well. But part of that package is we give kids a storybook, and we’ve got these little superhero capes and a little penguin, and we find that if the kid is willing, and we do accept that some families are all up for disclosure, and others are not.
And we’ve spoken to a lot of families where even people in their own extended family aren’t aware of the diagnosis yet.
So, everybody’s got a personal preference, but the kids who are willing to go to school, read out the storybook in front of the class, show them their spots, have a conversation about NF, we find that those kids tend to do much better in terms of bullying and social isolation and just acceptance from the school.
We’ve got beautiful photos of kids running through assembly, wearing the capes and everybody cheering them on and having mufti days and things like that. So, for us, it’s always about awareness and acceptance of the kid at school.
Megan Gilmour 37:19
I’m hearing there too, is that child’s agency in their own journey of being able to speak about it and own it,
Meredith Fanneli 37:27
Yes, but we accept that that’s not for everybody.
Megan Gilmour 37:30
Yes, absolutely. And I think this is a really critical point in anything we’re saying here, and especially since you’ve highlighted the fact that no two journeys are the same in this case, and that’s true of all health circumstances, even with the same diagnosis, but this one in particular, can have many types of presentations given the pathway that it follows any nerve cell.
So it’s always so important to acknowledge, while we’re talking about these things, there is also that person, that individual, not behind the condition, at the front of it, and wanting to be seen and heard the way that they wish to be, and that includes what they don’t want people to know as well which also drives into some different areas of conversation I’m sure we’ll cover here.
How are siblings and peers of kids with NF impacted? And what should families be across? And I suppose in that question is the fact that this is genetic in some cases, so it might be occurring for more than one child in a family as well.
Ruth Lindsay 38:55
We’ve got a family with four children who are impacted. But if we’re just talking generally in siblings that aren’t impacted, say, then that they play a big part of the work that we do as well, which is why we have the family camp.
So, the idea of the camp is you come for the weekend and those siblings can meet other siblings who have, and you find that siblings will be friends with kids with NF, you know, there’s no distinction between – that’s the wonderful thing about camp. There’s no ‘you’ve got NF’ over here or ‘you haven’t’ over there.
It’s really an all-in weekend of hopefully family fun, but that’s what we aim for, and siblings play a huge part in that. Because if you’re always feeling that your sibling, you know they’re always in hospital, or they’re always at appointments, or they got all the attention, the camp weekends can really be a chance for – I think it was described to us as it’s the one fun thing to do with NF that we have, is the camp.
So, I think that perfectly sums up why we love the camps, why we want to continue doing them, to have one thing that isn’t a dreaded hospital visit or, you know, at therapy or just an annoying thing about NF, it’s the one positive thing that families have.
Meredith Fanneli 40:26
And we did a webinar last year with Siblings Australia as well. So, yes, we do have siblings in our mind forefront.
Megan Gilmour 40:33
Yes, such a great, great organisation.
Megan Gilmour 40:38
Yes. Do you see both for children with NF – and also their siblings – are there mental health impacts present in families with one or more people with NF?
Ruth Lindsay 40:57
Absolutely. I think the mental health aspect is a really, really important point, which is why we have our NF helpline for that specific purpose, so that people can turn to us and share their emotional load. I think that’s a lot of what we do.
We can’t fix problems, but we can definitely listen and understand and guide people to the right services. I think that’s really important, because in our recent published report, the mental health load was something that was addressed. So, we now have that data to take to government and schools to say this is happening. You need to listen.
Meredith Fanneli 41:42
So interestingly, in that report, I think it was 71% of people with NF report a significant impact on their mental health. 77% of carers reported a significant impact. So, yes, I thought that that was quite telling that the carers results were actually higher than the people with NF.
Megan Gilmour 42:05
Yes, and this is one of the things that we’re seeing across illness disease groups, is the impact on the whole family. And one of the reasons that we’re deeply engaged with the Commonwealth Department of Education at the moment is seeing how much focus there is on mental health, which there should be, absolutely in schools, but nothing about medical conditions alongside that.
And yet we know the multiple – well, the complexity of that Venn diagram. You’ve talked a lot about that today. You’ve talked about ASD and the autism spectrum, you’ve talked about all the different ways that this can present, and then we’ve talked about those psychological impacts and the impacts on mental health. So, what we’re trying to say is it’s not mental health and only that, and then medical conditions are not mentioned.
Ruth Lindsay 43:23
They’re not separate – they’re whole – it’s the whole person.
Megan Gilmour 43:25
We’re whole humans, yes. And then we’ll have children with actual physical disabilities as well in that, and then those people might live in a rural or remote area on top of that. And so, it’s not all these different colored pebbles or chips that we’re talking about, ‘oh you’ve got that, and you’ve got that’, but it’s a Venn diagram.
That’s my picture that I get, and that Venn diagram is different for everyone as well, but the commonality is that multiple things are going on at the same time, and we can’t just deal with mental health without recognising that person’s physical health and vice versa.
So that’s one of our big pushes. It’s a really, it’s a sort of a false dichotomy, and it’s unhelpful.
Ruth Lindsay 44:14
Well, we are with you on that one definitely, one doesn’t exist without the other.
Megan Gilmour 44:16
I’m really glad to hear that, yes, I’m glad to open up this discussion so that we can draw that more into the light as well in our conversations with our policy makers and our schools.
Ruth Lindsay 44:29
And when you’re dealing with multiple systems, education system, the health system, NDIS, when you’re battling on every front that can be a huge impact on carers’ mental health. At every turn you’re having to explain yourself or having to prove yourself or having to retell your story.
And they’re all separate, rather than, you know, these are the services that will help you. Rather than being a nice little package of, ‘oh, well, that’s where I will turn’. People are having to go to all these different spaces and tell the same story again and again and again.
Megan Gilmour 45:13
Yes
Meredith Fanneli 45:14
And attempt to fill out NDIS forms at 10 o’clock at night, after you’ve put the kids to bed.
Megan Gilmour 45:19
Yes, and then some illnesses – if it’s not a lifelong illness it can’t go into the NDIS.
Ruth Lindsay 45:28
Let’s not go into that today.
Megan Gilmour 45:31
We won’t. We won’t because [laughter]
Ruth Lindsay 45:35
that’s for another podcast [laughter]
Megan Gilmour 45:36
I think that’s like 400 PhD dissertations that one. But yes, let’s put that under heading of this complexity that’s unhelpful, and also everything that we’ve talked about here, and we did say chronic pain was a part of the picture as well.
Everything that’s going on here for a family is meaning that without organisations like ours, these people aren’t being represented in conversations in government, because they don’t have the time to go to their MPs. They don’t have the time to execute a complaint process. Their load is already so great and significant that those stories aren’t getting out there as we know they need to.
Ruth Lindsay 46:35
Yes. I think those stories are essential and remembering the person at the centre of that story is everything to us.
Megan Gilmour 46:43
Yes, and so we move into the school conversation now.
Do you know the current population of school aged children with NF and if you do, how accurate do you think the data is, and is it tracked, for example?
Ruth Lindsay 47:00
It is not tracked. We would like all of our data to be tracked. And I think currently, NF itself is not even tracked in medical – or any systems. So, we have our own data points. We don’t have exact numbers on school populations, but, I mean, we can give estimates based on that 13,000 Australians.
Meredith Fanneli 47:29
Yes. So, I think if you look at any major High School, you’re going to have one or two children statistically that have NF in that school.
Megan Gilmour 47:38
Yes, I think because there’s a school student population of 4 million in Australian so if it’s one in 2000, I think that makes it 2000 for us.
Ruth Lindsay 47:47
There you go you’ve doing our data for us, Thank you.
Megan Gilmour 47:49
I mean, you know, even if there were four kids, it matters, right?
Ruth Lindsay 47:54
Absolutely, absolutely, yes, it always matters.
Megan Gilmour 48:00
And do kids with NF currently miss a lot of school, and if so, why?
Meredith Fanneli 48:05
They do. So, there’s the physical aspects of having a lot of appointments. And as you said, if they live regionally, then that’s often days that they have to travel to get to the major centers. We’ve got specialty clinics in Sydney and Melbourne, but that’s it really.
There’s a fabulous pediatrician in Perth running a different type of clinic over there, but he sees all the kids with NF. But the vast majority of the country are managed by pediatricians, and that can be a bit hit and miss with their knowledge. So, we’re working with pediatricians as well. We’ve just recently developed a GP training module where they can get CPD points. So, we think that that will go some way to help pediatricians.
So, travel and multiple appointments is a lot, besides the speech, OT, physio, allied health appointments that these kids have, if they have any physical stuff, they’re seeing ophthalmologists, dermatologists, neurologists,
Ruth Lindsay 49:17
Neurosurgeons, geneticists, oncologists.
Meredith Fanneli 49:22
All sorts of different people. So, there’s all of that therapy and appointment time that means that they miss school. But also, as we talked about before, the physical issues, the pain, the fatigue, sometimes they just need an early finish or a late start, because it’s just too much for them.
So, we can sort of advocate with the schools being a little bit flexible in that regard as well. So, besides all of that, then there’s the other issues that we talked about, about bullying and social isolation and, you know, school refusal and that sort of stuff.
Ruth Lindsay 50:02
Anxiety, sensory overloads and on it goes,
Megan Gilmour 50:07
Yes, I’m hearing that.
Ruth Lindsay 50:08
So, school refusal can be a big issue. If you’re not feeling safe at school and you’re not feeling heard and seen, and if it’s somewhere where you feel unsafe and not secure, then you can see why kids think, well I don’t want to go.
That’s, I think, the essential part of this conversation is that schools really be a place where it is safety first for that child, and safe as in I mean a space where they can learn positively in whatever way they need to.
Megan Gilmour 50:46
And thank you for highlighting that, because this is another very complex area, and we’ve seen an emergence in and raising of awareness on school non-attendance, which MissingSchool’s been talking about since 2012 and also saying there is a problem coming, and we’re in that time now, and this is actually happening at a global level as well.
But again, while ever medical conditions remain in the shadow, meaning they’re not talked about or considered in national school conversations, we’re going to see a continuation of absences that are explained or unexplained, but no solution to it, because I suppose this is where my micro plug comes in.
What we’ve really been working for is to have learn from anywhere established in every school in Australia, so that this kind of two way digital connection isn’t just the privilege of us sitting here in our professional lives and everyone around the country, but that children, if they’re able to, and they can, dial into their classroom when they can’t physically attend, that that is on offer, recognising that many children have health circumstances that are preventing them from physically attending, and we can do something about it today.
So that’s our goal. Our goal is to get our education systems to not only recognise that that’s a possibility, but to make it a reality. Because our work has shown that that is possible.
Ruth Lindsay 52:44
And I think just saying, ‘Oh, your child should be physically at the school’ and you’re right that that’s not good enough. We have to have frameworks around how we can enable every child to learn to the best of their ability.
Megan Gilmour 53:00
Yes, and it’s a well-known fact that chronic conditions are on the rise, and that’s partly to do with prolonging life and saving lives as well, and our education systems and dealing with children who can’t physically be in the classroom hasn’t kept pace with other advancements in our world.
So you’ve talked about your moment at camp when you see those kids connecting, when we see kids who have been missing a lot of school reconnect to their classrooms or missing school often and going in and out and experiencing anxiety as the stranger again, you know you’ve missed out on three days, and that’s like a lifetime for a kid, because everyone’s moved on.
To see the effect when that person dials into their classroom, even on peers and teacher, is it’s – it never gets old. It’s just such a joyous moment, and it’s so easy to do. So that’s my advert.
Ruth Lindsay 54:14
And the worry that parents have to live with. I think that’s really not talked about enough the ‘you know, they missed this much school’, and then that that’s giving that parent ‘they have to be at school.’ And how can I make sure that they’re not missing out? It’s a long, it’s a big load to carry.
Megan Gilmour 54:35
It is and our data shows that it is mostly mothers trying to solve that problem, while they’re also doing most of the heavy lifting on management of the condition, and that’s often affecting women’s participation in paid work as well, which for some families, it’s just not even a choice, you know.
And also, where there are additional costs, actual hard costs to the family of treatments and disease management as well,
Ruth Lindsay 55:09
Yes, it’s expensive too.
Megan Gilmour 55:12
And we’re in a cost-of-living crisis. So, you kind of look at the whole picture there and it’s certainly, you know, you can paint outside of the lines about the kinds of pressures that people are under.
So, what we hear is the second most important thing that the family worries about after the health condition itself, is school. And that’s not surprising. So, as you’re saying, if we can reduce that pressure by having schools understand, be aware, and then we can have a national approach to how schools deal with health conditions.
So, we’re not expecting schools to be doctors, but we need them to know what this means for learning, for social connection, for adjustments as well, so that we can accommodate, and you mentioned one! I mean, it’s just amazing to hear that this hearing device has made this profound and somehow had unintended positive consequences beyond what was expected.
So, they’re the kinds of things that can happen once school is brought into the picture, I suppose. Because, like you say, a lot of the time, it’s families thinking they need to work that out, and it’s their problem, and we’re trying to change that.
Ruth Lindsay 56:53
That you go to school and the school is there to help guide you through these challenges, rather than you having to always prove that you need this support. The support really should be built into the school. Whatever that condition is.
Megan Gilmour 57:09
Absolutely and business as usual. That’s what we say. It’s business as usual.
Ruth Lindsay 57:15
I mean, NF is just one condition. How many others are there? If you’re a teacher and you’ve got 30 children, there’s a whole lot going on, whether it’s social issues at home, whether, I mean, there’s so many things in a classroom that can be happening with kids, I think.
That’s why we created our resources to be so simple, because we are the biggest fans of teachers, and our job isn’t to teach teachers how to teach. It’s really just we made them A4 really simple – ‘This is NF’. ‘This is small adjustments’.
So, we have one for attention, we have one for executive function issues. We have a general NF tool kit. We have ‘navigating primary school’ so that parents can go in when they have that initial start to primary school, like a guide on what will help them to explain NF to the school.
We just tried to keep them really simple, because we know that if you have a big report on a child, and these are all the 20 page recommendations of what you should be doing, and you have one of those for 10 of the kids in your class, but we just made them really simple so that a teacher can quickly go, oh, that’s NF, okay, great. That’s a simple thing that I can do to help this child.
So, we had all of that in mind that we understand that schools are big systems, and there’s amazing people doing amazing work, and we’re sort of here to make it as easy as possible for everyone.
Meredith Fanneli 58:47
So, we’re not asking for any special treatment for our kids with NF. They’ve got specific learning disabilities like everybody else, and we want them to be treated and have those adjustments like any other kid with dyslexia or dysgraphia has.
There may be some physical stuff that goes in there. So often our kids will have like a bean bag in the back of the classroom where they just need to recharge for a little bit. Some of them do have noise canceling headphones, just to give them that time to mentally have a bit of a rest and get back.
Explaining to teachers if a child has run around at lunchtime – and also, these kids are impossible to feed, and they take an age to eat their meals – and so they’re likely to come back into the classroom having three bites of a sandwich, if that, and run around, and then they are exhausted. So don’t expect them to do anything particularly complex straight after lunch.
So, it’s that sort of practical information that we give. As Ruth said, we don’t teach teachers how they teach. We’re not educators, but we know NF, and we know how it affects our kids in the schoolyard as well as in the classroom and just providing them with those insights is often enough to make a big difference.
Megan Gilmour 1:00:15
Yes, we were completely with you on that part of the thing about school life is that it can provide some of the normalcy that’s missing in other parts of a child’s life who’s facing a complex health condition. And in many ways, even if NF was crossed out and you said all the things you need to say, it’s about how to provide the best education and social support and the school experience for that person, as well as safety in the school.
So, we always talk about a health and safety plan as well as an Individual Learning Plan. That’s what it’s all about, right, to just minimise the impact of the condition and maximise the equity and opportunity for these kids, so that they have the best chance.
Ruth Lindsay 1:01:15
It really is about equity as well. That is a really important one. It shouldn’t be luck on the teacher you have or the school you go to. It should be equal for all, I think without that, then who are we as a community? You know, if everybody doesn’t have the same starting point? So, as Meredith said, it’s not about extra and being special. It’s really about equity.
Megan Gilmour 1:01:41
Yes, and the Disability Standards for Education provides for all of this right now, including assistive devices, which could be two-way digital connection, as well as the hearing piece, or any other device that’s going to create an equal opportunity for that student.
And the Disability Standards applies to every single school in Australia, which makes it phenomenally powerful as a regulation. And schools know exactly what it is, and once they make the association with the Disability Standards for Education and a health condition which is explicitly covered by the standards, they can provide these individualised learning plans and these assistive devices, and the school can also get additional funding for those adjustments, for provision of those adjustments, so it’s it can create that virtuous cycle of support.
But we do know that schools often do not associate a health condition, medical condition, with the standards. So, this is something that we also strongly promote as a really – more than a solid pathway – it is a requirement of schools to provide it.
So, you’ve talked a little bit there about transitions, and so this next question, you might feel you’ve already answered it, but if you haven’t, please feel free to add.
Critical times in the life of a kid with NF in terms of school life. So, you know, critical times in school life, and what should families and schools be prepared for at those critical moments?
Meredith Fanneli 1:03:34
So, we have developed, after, you know, hearing about it over and over and over again, we did develop some resources. So, at the moment, we have ones for transitioning to school, so starting a preschool or kindergarten child going off to big school, and the preparations that you can do, and how to talk about NF and what sorts of things you can ask for. And we’ve got quite a bit on individual learning plans.
We also then have one for if you’re already in primary school, but you’ve just got a diagnosis or your child’s slipping behind, how you can advocate for your child in the primary system.
We’ve got one for transitioning to high school. In our brain series one for transitioning out of high school. But it’s not actually made it to paper yet [laughter].
Ruth Lindsay 1:04:30
But it’s a really important time ‘Oh, I’ve finished school. What now?’ that transition, but that should start in school, so that it’s not just that school’s finished, and there you go.
Meredith Fanneli 1:04:44
Yes. So, we’ve got a lot about that, and I would like to say that they’re the critical touch points throughout schooling, but the reality is, you have to do this every year.
Megan Gilmour 1:04:56
Yes, agree.
Meredith Fanneli 1:04:58
And you know, again, that’s not a criticism on teachers, because we do know how stretched and busy they are, but we always say to parents, don’t assume that just because you’ve handed over resources in February of this year that your next year’s teacher is going to have that.
And so, we have also developed just a three-minute PDF presentation that any parent with a child with NF can deliver. It’s very basic, but it does give the teachers the sort of critical bits of information about how NF can impact the child at school.
But then we do offer a service where we will go and do a virtual presentation to teachers, if that’s what the school and the parents want. So, we’ve done those all over the country. I’ve done one in person, but all the rest have been via Zoom.
And sometimes there’s just one teacher in the room, sometimes there’s 35 and we’ve done those for preschools up to high school. So, it’s very different each one, we tailor it to the child. We always talk to the parent beforehand about what are the things that you really want to get across in this meeting. And often, more often than not, the teachers go, ‘wow, so they’re not crazy!’
Everyone 1:06:28
[laughter] yes, yes.
Meredith Fanneli 1:06:28
When we sort of unpack how much is involved with having a kid with NF, yes, there tends to be a bit of a shared commonality after that ‘Okay, what can we do?’
Megan Gilmour 1:06:51
some big aha moments it sounds like,
Ruth Lindsay 1:06:53
Yes, absolutely and nice to see. You could sort of see
Megan Gilmour 1:06:58
the dawning.
Ruth Lindsay 1:07:00
Yes,
Megan Gilmour 1:07:03
Especially around, I imagine, you know, because it’s understandable that teachers may feel overwhelmed with the complexities of a complex health condition. It’s hard enough for any of us who might have had more exposure in that to get our heads around.
But some of the things that you’ve mentioned there go directly to learning difficulties, you’ve said that, and learning challenges, and really specific things that, you know, once those things are outlined and a teacher can really get hold of those, can make a significant difference in how they engage with that student and what kinds of supports are put in place too.
So, the good news is, once you do your transitional piece from high school or second secondary into university or outside of school, the Disability Standards for Education applies to every education provider, so that means universities as well, and VET sector as well.
Ruth Lindsay 1:08:17
We found they’ve been even more helpful, like that students thrive in those environments outside the rigid school set up.
Megan Gilmour 1:08:28
Yes, and it sits under the Disability Discrimination Act, and I think that’s worth mentioning, because it is to provide equal opportunity, but it’s also to minimise victimisation as well, or some of the stigma that can be associated with complex conditions and things. So that’s also an important part of it.
So yes, and you’ve mentioned individual learning plans as well. So, we say the same thing as you. I was really pleased to hear you say that it has to be done regularly. It can’t just be done once and not again. And even often, circumstances might change radically, even in a year.
So, it needs to be revisited, and I like to think about them as being portable as well, that they go with the student into healthcare settings, at home as well as in school. So that plan goes with them. It doesn’t just stop at the school gate.
So just coming into the last part of our conversation, how would you wrap up the challenges and vulnerabilities facing kids with NF at school, and what’s happening to address those at schools that you see, and is it enough?
So, it’s a kind of a – you know – what are the challenges, vulnerabilities, and are we seeing enough done now to accommodate those?
Ruth Lindsay 1:10:06
We would always say never enough, but that’s sort of where we come and with our little team of four part time support staff serving the whole national NF community, we really feel that burden of never enough, but we are truly trying.
Which is why we’ve created those tools for parents to go to teachers and to empower parents so that they can have the conversations themselves. Because there’s no way we can speak to every school within Australia. We would love to, but it’s never going to happen with a rare condition.
So, we have created those tools specifically so that parents feel empowered. And a lot of our job is empowering parents and letting them know that it’s okay to talk to the school about these challenges.
So, I think that’s a really important point, that every parent with the tools we’ve created should feel that they have the language to go to a school, because, you know, you have different cultural backgrounds, and not everybody is as vocal as Meredith and myself, so not everybody’s coming from that space.
So, we hope to provide the tools that people can then take to school to have those continual conversations. Of course, there’s never enough.
Megan Gilmour 1:11:32
Oh, I lost you for a moment.
Ruth Lindsay 1:11:33
It’s never enough, according to us, but we hope to think that we do our little part to help educators understand children with NF and the vulnerabilities are those multiple complex things, the mental health, the physical health, the social and emotional wellbeing all wrapped up in that one little school child.
It’s not easy, but I also don’t think it’s something we can ignore. So, I think it’s something we should all take on board. And the awareness piece is very important to us, because with awareness comes that understanding.
Megan Gilmour 1:12:15
Yes, thank you for that answer. And I’ve just had a moment in saying this and I should reflect back on other calls, because I wonder if the way that I’m saying that sounds like your organisation, and whether my question is being taken as is your organisation doing enough? And that certainly wasn’t my question!
Meredith Fanneli 1:12:38
Oh no – we didn’t think of it that way.
Megan Gilmour 1:12:39
I just noticed that everyone sort of answers in a similar vein, which is, we can do more. And it’s like, yes, but there is a responsibility in our systems that should reside there too, you know?
And as we’ve all said here today, it’s not just NF. There are just so many, from very common conditions, right through to many, many rare conditions that all put together add up to a lot of people.
And we still don’t seem to have a national approach to what it means to have a health condition at school and what should be the baseline provision. And then the support on the specific, you know, things in that condition, that schools need to be aware of and know, is the icing on the cake, if you know what I mean.
Ruth Lindsay 1:13:41
And the onus shouldn’t be on the teachers who are already overloaded with their 30 plus class kids in the classroom. I don’t think we should expect teachers to be doing more. It’s the systems around those teachers need to be doing more.
Megan Gilmour 1:13:56
That’s right.
Ruth Lindsay 1:13:57
So, there’s a lot of work that could still be done to make it easier for teachers, easier for parents and better for children.
Megan Gilmour 1:14:10
I hear you – I definitely agree
Meredith Fanneli 1:14:12
In the ideal world I would love schools to have the therapies embedded in them
Megan Gilmour 1:14:16
Yes!
Meredith Fanneli 1:14:17
So, a child can get speech pathology or professional therapy at school. That happens occasionally, and when it does, it’s amazing,
Megan Gilmour 1:14:23
Yes, yes.
Meredith Fanneli 1:14:30
And particularly the way the NDIS is going. I would really love to see that level of service at school.
Megan Gilmour 1:14:30
Yes, and I know there’s some researchers out there really promoting schools and education systems as a platform also for health services delivery. And I’ve long thought that, and I can hear that you have too, why not put the services where the children are, and maybe even if those were available, then more families whose children aren’t going to school would be heading back to school for more complete care, I guess.
It just makes a lot of sense to me, like there’s one thing about schools, is they’re physically located all over the country, so they’re the perfect sort of delivery model to add health and allied health services too, if those are available. Yes, that’s actually a great end.
Ruth Lindsay 1:15:42
We share that vision. Definitely.
Megan Gilmour 1:15:47
So we are at the end, and so I want to ask, is there anything else that we should be asking about school quality of life for kids with NF?
Meredith Fanneli 1:16:03
I think it’s just that awareness and understanding that’s the big thing for us. Yes. We don’t expect anybody to have a good working knowledge of NF and what it means, but just to be able to ask those questions and be able to do what you can with the resources you have to make that child’s life a little bit easier at school.
Megan Gilmour 1:16:31
Absolutely. And Ruth, do you have anything to add to that?
Ruth Lindsay 1:16:34
Exactly what she said, and I think for us, it’s educate yourself about NF and contact the CTF if you want any support with that education. That’s really what we would love people to know from today, is that we are here and we’re always happy to talk about NF to anybody who’ll listen.
Meredith Fanneli 1:16:57
We do a little happy dance whenever we get a phone call from a teacher asking about, ‘Oh, I’ve got a kid in my class with NF’, the only time we do a bigger to happy dance is when we get a GP who rings!
So, we do have accurate and relevant resources, and we’re happy to share them with anybody.
Megan Gilmour 1:17:22
And absolutely fabulous that you’ve done so much heavy lifting there, and just a shout out again for your work, and a shout out for all the many resources that you’ve developed and put together that are available right away for anyone who needs them. So that’s super.
Now, call to action. Maybe you’ve already said it, but what’s your call to action for NF in seven words or less?
Meredith Fanneli 1:17:57
I think in a roundabout way, we said it before, but really for me, it’s educate yourself about NF and contact us.
Megan Gilmour 1:18:09
Great, yes.
Ruth Lindsay 1:18:10
And that goes for other organisations who are thinking and struggling with, ‘oh, we’d love resources’ to please just connect with us. We’re all working in the same space with the same goals no matter what condition a child has. So, we’re open to collaboration and supporting anybody that is keen to support children.
Megan Gilmour 1:18:35
Yes, hurrah for that. That’s why we’re here today. So, a shout out to Children’s Tumour Foundation Australia. You can find them at www.ctf.org.au. Go there, get the resources, have the conversations, give generously.
Thank you for joining us today on Live & Learn, Ruth and Meredith.
Meredith Fanneli 1:19:00
Thank you.
Ruth Lindsay 1:19:00
Thank you for having us on Live & Learn. It’s been really wonderful. Thank you for allowing us to share our NF story.
Megan Gilmour 1:19:07
It’s been an absolute pleasure.
Megan Gilmour 1:19:14
Thanks everyone for tuning in. Help us turn up the volume so all kids are Seen and Heard. Follow along, like, share, comment or leave us a review, because we love hearing from you. And if you want to donate head to www.missingschool.org.au, because every dollar makes a difference.
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