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Episode 3: Inspiring Change Through Connection: The Type 1 Foundation
75 Plays2 months ago
In this episode, we chat with Ange Liston-McCaughley, founder and CEO of the Type 1 Foundation — shares her vision of supporting families on the emotional journey following a Type 1 diabetes diagnosis. Ange, alongside her family, has dedicated her life to fostering a supportive community for families navigating the challenges of Type 1 diabetes.
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Transcript
Introduction and Mission
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Reliance on any information provided by this podcast is solely at your own risk.
00:00:22
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about Type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers, and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion, and support, no one should ever feel alone in managing Type 1 diabetes. Welcome to the Type 1 Club.
00:01:01
Speaker
Hello everybody and welcome back to the Type 1 Club Podcast. I'm your host Jackie Kidman. So today we thought given that we're launching this through the Type 1 Foundation, we thought it might be sort of timely and also very important step to explain to everybody what the Type 1 Foundation is and who better than the founder of the Type 1 Foundation. and so And what I think would be really great is if you could just share with everybody, I know you have a little bit in Lila's story, but share with everybody how the foundation started.
00:01:37
Speaker
what's the philosophy behind the foundation, the work that you do, and also the vision for the future.
Lila's Story and Foundation Inspiration
00:01:44
Speaker
Take it away. Yeah, Jackie, I mean, as mentioned in the last episode, we sort of spoke a little bit about Lila's diagnosis and, you know, it being the catalyst to the reason the foundation exists. So Lila was diagnosed 10 years ago, as I mentioned, and the foundation was created nine years ago. The idea of the foundation literally came to me as I was running a marathon. So after Lila's diagnosis, I really wanted to do something that was meaningful. I had a lot of, was sort of dealing with a lot of anxiety and a lot of sort of issues around not sleeping like most type one moms and dads out there. And um I started running and I started sort of running around the block and then that turned into running to the river and then it turned to doing the Great Ocean Road marathon. After doing that, I sort of realized like,
00:02:34
Speaker
the amount of awareness that I was creating in the community and people were following along. And then I sort of thought with the funds that we raised, I wanted to obviously do something that was more meaningful to obviously than giving to something else was could I create something around connecting other people and obviously creating that awareness to be much wider than what and was already out there.
00:02:57
Speaker
The big thing for me at diagnosis was the loneliness and the isolation and the feeling that, oh my gosh, there must be so many other families out there feeling the way I did. So yeah, the foundation was created in June 2015 and it has since become bigger than I could ever have imagined.
Awareness Through Blogging and Events
00:03:17
Speaker
And yeah, like we sort of started to supporting four families with the mum's dinner. know And then after that, we moved into creating the small family events which have now become large-scale, you know, family events that everybody knows at zoos and theme parks around Australia. So I guess Jackie, the big thing was for me was to sort of link in with other mums like you and other families that, you know, I knew you were there and i just I just don't think that anybody needs to live with this by themselves alone. So yeah, it was more around creating a community
00:03:52
Speaker
And can I just ask, how did you do that initially? So sort of Facebook and stuff with the first kind of like social media is probably not as, wasn't as prominent back. you know nine years ago, but it was still there. Is that yes how you sort of started? Yeah, it was blogging actually. I began blogging, was when the blogging was all happening. were a blogger. It vlogged. Before I video vlogged, they vlogged and I
Fundraising and Growth
00:04:19
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used to write big blogs all about just different scenarios that were happening, very honest, raw stuff around
00:04:25
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what we were dealing with at home and how I was surviving with four little children and and then yeah the the charity just kept growing and growing and we reached more people but part of that was going around Australia and running a marathon in every single state and so I around twelve i around ended up running 12 marathons in one year And then from that, I just sort of couldn't believe the following and then obviously the fundraising. So we raised around, I think nearly 25,000 to create the charity. And that just gave us that little buffer to begin and create what it is today. But it it is like a lot of people look at it today and think,
00:05:01
Speaker
It's always been this way. It's definitely not been. It's definitely been a very grassroots, organically built organization that has been based around volunteers and hardworking people, working from kitchen tables, you know, using the kids playroom for years as the warehouse and just doing everything really small so that we never ever got too big for our boots.
Volunteer Base and Personal Touch
00:05:25
Speaker
That was always my mentor.
00:05:26
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but Yeah. And I think for me personally, like I always have been someone that liked to give back, whether it was at school or in the community. So running a charity, I don't think it really surprises many people. And now I'm not saying that as it's just something that I like to have always liked to do be beyond committees. And yeah, I feel like it sort of evolved from there. I can't even knowing like two years in for us used to be going like, you know, I get it like working towards running a marathon and then doing 12 of them across the year. Like I find it difficult to some days have a shower. um So you are totally awe inspiring. Like I remember saying to you, okay, that's a story in itself. How did you just get out of, managed to be getting out of the house?
00:06:14
Speaker
But that's a whole that's maybe that's another, you know, sort of side of the story, even with the fact that I've got a lot more access to information yeah on my phone that I can call Harvey or I can see what his levels are ah so that I can make that sort of choice if I am out trying to exercise or even just go to the supermarket or whatever. But that being able to just walk out the door and Lila didn't have a CGM until probably halfway through or that's a whole level of working out how to manage your anxiety just by being able to walk out the door and know that she's going to be okay. Yeah, that's exactly right. I think the running for me became a mindfulness exercise, a way to deal with anxiety and um keep my mental health in check.
00:07:03
Speaker
I used it as time away from my own four children who were very young at the time. It wasn't an easy process to leave the house and get out the door. It would often be an hour and a half after I'd planned to go. um But I do also have a very supportive husband who's always sort of oh you know, being always just great for my crazy ideas I come up with and just sort of supported them. But I think for me, it became a way that my mind could stay strong amongst all the chaos. And I also enjoyed the time that I'd spend running by myself. And that would be when I come up with all my amazing ideas. I'd come back, I'd write them down and I'd or in my phone on the way and
00:07:47
Speaker
I'd sort of say, oh, you know, and one day it was, I came back from a run and I said to my husband, I think I want to start a charity. And I had this vision of just groups of people altogether and all the kids just wearing their pumps and everybody just, I don't know, it was just a weird vision I had while I was running. And he's like, okay, do it if you think you can do that. ah But yeah, running was, yeah, it was a, it was definitely to keep my mental health in check.
00:08:13
Speaker
I also am someone that I've always said, I don't sit still very often. And when I do, it's often like, you know, I'm really neat, like I listen to my body and I said, I need to literally lay down. So I do, you know, but but I don't sit still much. And I grew up in a family that was very busy and eight kids.
00:08:38
Speaker
and my parents are super busy people. So that's just all I know. And that's who I am. So. And that's very evident, I guess, with where the foundation is now and how how it's grown is that it's not from someone that's kind of gone. That's enough. We're just doing that now. And we'll just sort of, that's all I wanted to achieve. But it feels like that you've constantly listened to people's suggestions and ideas and thoughts and have, have worked on building on that. So the foundation is probably like an extension of myself personally, where I like to evolve as a person. And therefore the foundation is very similar. I look around and see what's not out there. I'm not interested in replicating anything that's already there.
00:09:30
Speaker
and I look and listen to the community and you know the families who are living with it and I don't imagine that we won't continue to always have that aspect of it where it's grassroots and I'm on that ground level you know because at the end of the day I'm there as well doing what they're doing and I feel like that's where we sit differently to perhaps other organisations out there where we're just a normal family who live with it like everybody else. And and I do truly hope that still that comes across like that. I think
00:10:04
Speaker
I'm not perfect as well. My life is very much around, I always say like I'm a type one mum first and a CEO second. So
Support and Connection for Families
00:10:12
Speaker
I do take my role as being a mum very seriously. And I've had to work really hard like most other people that work in big roles to make sure that I do stay that the mum first, because it's a really important role to me.
00:10:27
Speaker
I don't know if you could do a quick sort of just fire off all the things currently that the Type 1 Foundation do. Sure. So currently the Type 1 Foundation is involved in lots of different things. So our three big pillars are support, awareness and connection. So the support aspect and the connection comes from the Type 1 Mums dinners, our kids catch ups, our big large scale family events, which includes Christmas parties and big theme park events.
00:10:56
Speaker
We also do online support, so for nearly diagnosed grandparents, teenage seminars that are done with a counsellor, Angie Manske. And behind the scenes, the lot of work that we don't really share online is a lot of advocacy stuff. So working really behind the scenes to campaign for change and to be able to make sure that our children and individuals that live with Type 1 have a better future. so There's a lot of work that happens with Type 1 Voice that I do behind the scenes. And other aspects of that as well is I'm really, really passionate around the Don't Ignore the 4 program, which is a a program that we roll out in medical centres all over Australia and through our social media campaigning around the symptoms of Type 1. And yeah, they're the sort of, you know, the big pillars of support, awareness and connection that we do.
00:11:50
Speaker
Part of my role as well is obviously very much around managing staff members, 280 plus volunteers, 80 something ambassadors. One thing I do love dabbling in is the social media. I love making a reel. Although I don't need to because we actually have a social media manager, Andy, who does an incredible job. i do like She knows that I love just jumping in. and yeah my my My background is events and um and fashion design. so I feel that I still get a lot of creativity out of social media and things like that. Don't ignore the four. The four early warning signs of type 1 diabetes. Excessive thirst, frequent urination, unexplained weight loss and extreme fatigue. If you or someone you know is experiencing these symptoms, don't wait. Get checked by a healthcare care professional. Early detection and treatment are key to managing type 1 diabetes effectively.
00:12:51
Speaker
And I
Expanding Visibility: Invisible Brand and Type 1 Hub
00:12:52
Speaker
know that there's lots of things happening in the in the future. You've got a little hub that's being created in Geelong. So maybe just tell us about the next steps for the Type 1 Foundation. Yeah, sure. Something, as well, I didn't mention before, was our merchandise, so our thingies, and um ways that we can you know spread that awareness around.
00:13:16
Speaker
And the Type 1 Hub will open at the end of this year. And it is all around creating a new brand that's called Invisible. And we're going to be hoping that family and friends of people living with Type 1 will share in our vision to create a more visible ah future for people living with Type 1. We want to get it out there. And the reason we called it Invisible was that, you know, we always know that Type 1 is an invisible disease. So we want to make the Invisible visible in an invisible way, if that makes sense.
00:13:46
Speaker
So the people want to rock rock the tight one. I'm really proud of the merch aspect of it and that is again another big aspect of what I do daily and it is a very creative role that I ah do again have a very good graphic design and production team but It's something I enjoy personally is getting involved in the processes of creating merchandise. So I do see that the future of the Type 1 Foundation, um the hub will all be about creating one hub, one place that everybody can come to. And it is in Geelong, but it's the first hopefully of many. But yeah, I'm heavily involved in all aspects of the Foundation daily. So I don't think that
00:14:31
Speaker
I'll ever just be at what you probably call a CEO. I think my role is lots of different things. You know, when you create something and then it evolves and it gets, you know, it's so much bigger that what can happen is that all those things of why you created it will still be there, but why you love it.
00:14:50
Speaker
you get taken off you, which is really hard because then where's your passion kind of gone? Because yeah it's almost like, well, everyone else can do the fun stuff. Yeah. Like now you've got to do the the tougher things. It's boring, isn't it? You know, ah so you've got to keep that sort of that excitement there. Yeah. and Then that then shows through, I feel. Yeah, that's great. It's just really nice to hear that because They're just my little things that I like to do so I hope that it does shine through because ah that that's the reason why I'm still passionate because there's still little ways that I can contribute. but but Even though a lot of it does get taken off me now because decisions get made at a higher level where you know everybody doesn't have time to continually ask me all the time.
00:15:35
Speaker
but they still know that I definitely have the last say on lots of things only because I need it to keep the touch, you know, that special sort of, yeah. To be honest too, I don't want the foundation to grow too much more. I want to just be able to do what we do really well, supporting more people, but not necessarily expanding to control the world type thing. I don't need to, yeah, it's never been my intention. Just, I like to do things well. So like at our large scale events,
00:16:05
Speaker
they they're just We're just tweaking them all the time to create them better and better and better. And that's where we're working towards now. And obviously ah it's going to get to a point where I can't physically beat every single event. And um I'm really, really grateful that I have a great team that i can you know that takes over and trusts. And I think that's what it's about as well. like I'm really, really proud.
00:16:27
Speaker
of the fact that a lot of the staff, board members and volunteers that were there at the beginning are still with me working alongside us. So I don't know if I'm doing anything right, but sometimes I sort of think like, I hope, it's always been a big thing in in my um my life goals and values to be a good leader and a good boss. And a lot of them I would call my friends. So I feel that's a ah really important aspect of what I do. Yeah. So when, you know, you talk about how many volunteers, I mean, the thing is, it's just only going to keep on, unfortunately, it's only going to keep on growing. Yeah. With the the amount of children and people that are diagnosed each week, the first thing that I remember doing was searching what was out there. And I
00:17:15
Speaker
And I also remember people messaging me and saying, you need to connect with, you know, the type one foundation, like all these kind of foundations or pages or, you know, that sort of stuff. And it was kind of like, ah, okay, I'm not, I'm not alone, but also it could also be overwhelming with information. But it's almost like a drip feed. So when you're ready to, you know, when you're ready to attend an event or sell the beanies or jump online to one of the webinars, like it doesn't have to be all or nothing. It can be when you're when it suits you and what information you need at the time and support. I really love that. That feedback means a lot because that is exactly why we're there. And people come and go, Jackie, like I've had people that joined at the beginning, they go off and do their thing and then they'll come back when they need support.
00:18:05
Speaker
or things aren't going well or that their child's ready now to connect and ready to come to a big event. And I think that's what we are. like I like to think that we're like a sounding board or just a soft cushion to land on that will never make you feel like you know people might get FOMO for not coming to one of our events.
00:18:25
Speaker
But they might then turn around and use that and say, look, that just means I want to come next year. We don't ever pressure anyone to do anything. And I always say that, that we're just here for you if you need us. And when you're ready to connect, come along. You're always welcome. The door's always open.
00:18:42
Speaker
The care packages have definitely evolved into one of the biggest parts of our organization in funding wise but also time wise that it takes to create them and the products that are in them are very well thought out in terms of what you need at diagnosis and that's evolved as well.
Care Packages for Adults
00:19:00
Speaker
But the idea of the Type 1 Foundation Care Packages is again that it's just a big warm hug and it's a little package that arrives at your door a little bit after your diagnosis that says, you know, for you to know that you're not alone.
00:19:16
Speaker
and that we get it. And all of the products, they're not just thrown together in a backpack, they're picked and sourced for a reason. And yeah, we're really proud of the Care Package program. And ah this year, we actually are expanding it into adults at the moment only do children.
00:19:36
Speaker
but the care package program will be expanded into supporting adults as well. So it'll obviously be a different kind of care package, but it'll be a similar idea where we know that Type 1 is not diagnosed as teen childhood, that it can be diagnosed at any age.
00:19:52
Speaker
and more and more adults obviously being diagnosed. So we wanted to support that part as well. So that's what I was talking about before where we acknowledge what's not getting done and we have to assess that and work out whether we can support that and fund that. And then if we can, obviously it's got to a point now where we're ready to go. So we're ready to launch that in September this year. So that'll be fantastic. Anything else that you want to share about the Type 1 Foundation before we wrap up. I will sort of add to that that the foundation as well as like very much a family foundation like my parents, I could never have started the foundation without my parents and my dad is still the chairman on the board and it's made your passion for being on the committees and boards. Yes, yes, I think I get it from dad. Yeah, my dad's on every board there is. are And my mom lacked super, like, my mom was an amazing volunteer growing up. I always watched my mom be
00:20:52
Speaker
you know, all different things, even though she had eight kids, she gave and gave. And I think my grandparents are very similar sort of values to, I i always remember my, my Nana doing lots of things for other people, but my parents are super supportive. Like anything I came to them, my parents are like, you do that. You can do that. You know, you've got this, even now, or my dad, I'll go to my dad and ask him,
00:21:14
Speaker
for support business wise. And that's been, I think having that backing has been fantastic to be able to have that, but also my husband and my children. And obviously the the reason the foundation started was because of my beautiful daughter being diagnosed in such horrific way and wanting to use those feelings of trauma in a more of a positive way and just believing that this can't happen to anybody else. So you know we really are pushing the Don't Ignore the Fall program. But yeah, I guess the foundation is very much a family foundation. And i I know as well other people that are involved definitely have all their families involved as well. So
00:21:58
Speaker
The thing about Type 1 diabetes, as we all know, is it affects the family, it affects the siblings, the the parents, grandparents get affected as well. We definitely know. We could say it's ah it's a family illness, Type 1 diabetes. Yeah, I would totally agree with that. And thank you so much. Unless you have anything else that you wanted to add, I'm sure you could we could keep talking, but we were trying to keep these podcasts short.
00:22:21
Speaker
But in terms of the legacy that you will leave is just incredible. Everybody knows the Type 1 Foundation who is Type 1, who has a Type 1 in their family. um And to to just be an idea that you had from going for a little jog around the block. I'm sure it was maybe like 15Ks. And to to have it evolve into such a big organization that connects people and community and helps people to feel like they're not alone and that the way that their child was diagnosed or the way things were picked up for them is you know the same as so many others um and everybody has those stories and that you've created that platform for them to be able to share it.
00:23:09
Speaker
It's just amazing. I think that you are very inspiring. And and now we get to add another platform of a podcast on to that. Can I add something quickly about what you just said? The thing that gets me every time so still, and it's what keeps me coming back for more, is that I still get phone calls from nearly diagnosed parents and daily. I just got one yesterday and they, just the emotion the the feeling of being so lost and it's so scary those first few days and I'll get a call and I'll sit on the phone call and talk to a parent and I'll say that that's why I do what I do and that keeps me coming wanting to do more.
00:23:54
Speaker
So those words are really kind and ah they mean a lot. But what means more to me is what how you can literally change someone's day by just listening to them and saying, I know how you feel or that you know you're not alone. You actually have joined a community that's actually quite an amazing community because The reason I started the Foundation was because of what happened to me, but the reason I keep doing it is because of the people that I work with that volunteer for us. People like yourself, Jackie, that want to give back to others, the mums, what they go through, but they still have the time in the day to want to help.
00:24:34
Speaker
That's the reason why I keep wanting to do more and help more. So yeah, that makes me really, really proud. And I think that's the legacy is giving also else something else that I'm really passionate about is giving especially moms an opportunity to shine and to show their true potential when they're in the depths of despair or you know gone through so much. And to see what they're actually capable of, like some of the things that our volunteers and things and staff do is incredible. And I do believe they may not have done that if hadn't have gone through the diagnosis of their child and some of them some situations that are similar to my own. so
00:25:21
Speaker
I feel really blessed that I'm in a position to be able to give opportunity to people. It's amazing. Thank you so much for your time and we look forward to seeing you back here again for the next episode for the Type 1 Club.
00:25:40
Speaker
Thank you
Stay Connected: Subscribe and Follow
00:25:41
Speaker
for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms so you never miss an episode. We also appreciate it if you could leave us a rating and review. It really helps us to reach more listeners just like yourselves. For more updates behind the scene content and to join the conversation further, Follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website type1foundation.com.au. Thanks again for listening and we will see you next time on the Type 1 Club.