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Andrew Bannister – raising awareness of PVNH and rare brain diseases



In this week’s episode, Josh is talking to Andrew Bannister who was a Winner in the 2021 7NEWS Young Achiever Awards for Western Australia.

Andrew Bannister was born with rare brain malfunctions, including Periventricular Nodular Heterotopia (PVNH), but these have not stopped him from achieving many things. Inspired by the story of Ella, whose mother organised to light up the Perth Bell Tower in 2018 after Ella died of PVNH, Andrew decided that he would organise to light up more locations to bring awareness to the condition, and later, of all rare diseases. In 2020, Andrew organised 35 landmarks in Australia and around the world to be illuminated for Rare Disease Day in February. He has already organised for 50 landmarks to be illuminated for Rare Disease Day 2021.


In this episode:

  • We hear how Andrew keeps his mind and body active, instead of lazing around – something his Mum taught him
  • Andrew is also a passionate cyclist with winning titles in multiple Australian T2 para-cycling championships
  • We learn about Andrew’s 3 mottos
    • Give back to the community
    • Mind over Matter
    • Every day matters


Follow Andrew on Instagram

Want to find out more about PVNH? Check out https://pvnhsupport.com/

Or visit the Rare Voices Australia website for info on rare diseases. https://rarevoices.org.au/


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Welcome to the inspirational australian’s podcast, where we chat to people making a difference in their communities and in the lives of others. And here’s your host for today. Josh. Thank you and that Well, today I’m not actually recording with you because you couldn’t make it today, but I’m really excited to be joined by andrew. Now, Andrew Bannister is twenty nine. And you can correct me if he’s recently turned 30, but according to my notes, he’s twenty nine. And he’s actually very, very recently announced as the winner of the masonic w.a. And freemason’s community service and volunteering award. So we had that awards night back in May. The end of May two thousand and twenty one and just a delight to have andrew here with me because his story is really special and very inspirational. So it’s incredibly fitting for today’s podcast. Andrew was born with three rare brain malfunctions. And I’m going to try to do in a minute and in support. person his friend, tabitha, is joining us to help us pronounce that, but the attribution is people and but these functions have not stopped him from achieving anything at all. He is a real go getter, inspired by the story of ella, whose mother organized a lot of the personal talent in 2013 after ella, sadly died of people. Andrew decided that he would organize to load up even more locations to bring awareness to the condition later on. awareness to all rare diseases. Last year, andrew organised thirty five landmarked in Australia and around the World to eliminated the rare disease day in February. Is already organised for 50 landmarks to be eliminated. The rare disease day this year and three thousand twenty one. And I’m delighted to welcome, but this week’s dose of inspiration. Andrew, how are you? Good thing too for Me to come on and thank you. Yeah. absolute pleasure. And it’s great to be joined by you today, and I was saying to you before we started recording, but just remember back at home, I think you have the best zoom background. And I sort of think back into a real background, a very impressive library bookshelf behind you. And maybe you want to let the listeners know about that little kangaroo, because that was called The kangaroo behind me in films in nineteen eighty to come game. My dad was a volunteer at the 92 game and they’ve been and a wall of badminton volunteer and a she can be fine. And that’s really cool that I like to think of myself as really good at sports trivia. But I didn’t know if you’d ask me where the 1982, commonwealth games were. I wouldn’t have done. Yeah. So andrew, as I mentioned in the bio, in introducing you to some of the things that you have become known for in terms of especially this award, was regarding lighting up those landmarks and things like that. But I wanted to go back and touch on the story of ella was a famous person who had pb and and maybe you could let me know how that happened, how you came across a story. And then maybe we can ask you as well to elaborate on what that that rare disease actually is. And I found pavi in heights on site beaucoup urine. Well, I’m a founder and ceo and I love fev in vancouver in Canada. And every year on August seven, it is a world pavey in lifestyle and gta iv before of a different of the world paid in day in full week. And yeah, I have already organized from myanmar to be top of the non, not in New south wales and the bell tower in perth, and from our building. Um yeah, that’s also the big banana, i think would be pretty cool. Yeah, yeah. And, and all five congreve are pink and I full well where I pavey in state and it is so cool because I’ve been a big fan on erva and we will go pink. That look good. Yeah, that’s brilliant. So you had 10 years of celebrating the baby and raising awareness and it sounds to me like something that is so important because before I heard your story and I wasn’t aware of it, I had no idea. Yeah, I found out to failed in 19, i felt i had no idea or of organizing my mom for red done and because of her a world wide and fame now. Yeah, thank you for the. Yeah. It’s excellent. And so can I ask you a silly question, but how do you go about asking one of those landmarks to come up? I write one e-mail and had set foot in my of a couple of words. I fight where they live and I have my face down 1919 and then I will talk about where did they leave and how many people in the world. And then I copied the same name. You but I changed from world fight with fire in my going and what day and what a four and I copy and paste. Call One name My you take me out to to um yeah. Right, honey, that would be a very time consuming and copy and paste it. Very good. It’s a helpful tool, isn’t it? Yeah. But you’ve already got 50 landmarks and so even if we only talk about the successful ones, the one about 50 hours of your time. And I can imagine you send out a lot more than that. They don’t come back positive response. So it starts to give people an idea of just the time and effort that you’re putting in to this and you know, such a because that is not just local to you. Obviously as you were saying, go places in check is international. So yeah, it’s really impressive. It all started the empire state building in 2011 and 19 of the nine mark in the world to be tough in New York, and in May. And now then in turkey or from I am and now it over four hundred and fifty world wide. Yeah. Well, the empire state building is impressive, but I still think the big banana is the bigger the bigger get that Well done. OK, so andy, can you tell us a little bit more about pavey and what it actually means in real terms for you favore in time. If people who have pavey in heights have a lot of different, if you live long if and pavey in heights, have many fullwood in the back of the eye. An analog core of paiva, in favor of people who have saved and tough food. I haven’t had any favorites in my life and of paiva in heights evite one hour of my life and my p and p and g. Yeah, yeah. So was it something that you had diagnosed as a child or was that as you’ve gotten older, this different diagnosis? Because I know one thing you told me was that there has been some kind of I guess progression there in terms of doctors understanding what’s been happening. I was diagnosed when I was 17 by neil live in melbourne at the royal children’s Hospital. He went off to Chicago to study become in Chicago, you need, I have a big paying mouth and my been on a phone in Chicago and then he came back and worked in melbourne. Yeah. So that was even that diagnosis when you were getting paid. He died. You may have a lot to do. Well. Yeah. And did you have to travel over to anywhere to go? I did. All right, bill. Take care and my my input had I need live in to be and then he sent my nephew to go to wake county in melbourne and then oh yeah. hard work. And yeah, that’s one good thing about the technology we have and have connected the world is . And I want to thank those Who have been trying for or help and or hard work and and or if I can’t hope for the net to count for who work we don’t live in at oil children’s Hospital in melbourne. We understand one of the side effects of your condition is that the balance can be quite high that you didn’t walk for a long time. When you were a child, you going to have memories of, of that or do you remember what it was? It was like as a kid trying to get around I, when my dad tell the story all the time to pay when I went in a TV one day when we went to see pomoc, i was about five years old. He fed to hate while them to kill and a while not going to move called. I need to come to him. They come to me And yeah, and of the I don’t when men buy a two bit, when I go to walk, i mean one memory. When I wore it to my fur fin tech on wall my door, it was too bad to leave a volvo because of the color. I loved wall when I was even a two hour drive in the boot of my uncle’s volvo. But between two people, my two people I know and I was way, way to living along the coast in perth, coming back from fixing fault. And I felt too bad for volvo because back then you went to bed and they called and know for a while. And also it makes sense to me, I think it’s a bit harm. And yeah, that was my first thought it did in my friend. And I think it was too harsh. I mean like that you were in the middle of the story and it was a very fun wagon and old volvo, have faith in the boot behind the middle face. And yeah, look, I assumed that it was all aboveboard. You weren’t just yeah, no, no, I’d go That’s great. No. That’s, that’s incredible that you have that memory. And I suppose that helps as you said, with your dad telling stories and things like that. Yeah. But with that as a kid about the media, just the stories that mom and dad have told me. Yeah. Mom famiglia been fully supportive of me and I couldn’t be where I am today without him. My mom, my dad and my feet captain. And my mom taught me to, to drive around at home to do the hard work. And I kept that in my heart all along when I go to work. And I remember faye telling me the hard work of good work, not why I’ve been at home watching TV. Um. Yeah. Your mom sounds like a very wise person. Yeah. Yeah. And so that’s fantastic that you had great family support. Was your sister, older or younger? Favorita, four year old and yeah, all my family And my mom may have mendte could find my dad work at uni in perth eight and calvin and feed a tayfun and a evar fionn to my mom and my dad by flying to and my fact is for the immigration department, she was a diplomat before covid. Yeah. Yeah. Wow. So you’ve got a diplomat, three scientists, and an absolute go getter who is building up connections around the World to raise awareness. I think we need to start a family achiever award and the family is going to be the first nomination to have great family support growing up. And also you told me about sport and the role that sports played for you as well. For being a big fan in my life because of one thing, it kept me healthy and out of all my teeth would be steve fabletown mouth and my thing, kanab i’m healthy and active and that all fine hard work. Not driving around doing katmai. Yeah, fine. And port being of a good I met so many guys fynn and people in my life. And yeah, I started for and on a national level in 2000 and on dove by diving into peak time peaks and was hired to film watching TV and of pay to pay people. And that’s how I got into sport. And yeah, I’m paying alwi of my dad off. I mean come with me to the pool and the family table. Me key in hockey When i’ve been playing and I did teach and now fikile and yeah, and I understand you’ve had some success in cycling. Andrew. Yeah, I am, I will in chief telvin and 20, four fine pay five cooling, national champions. That’s awesome. And so it must have been cycling at a number of different events. Eva, i got to not know in any way I did in the back of pick pickup on new Year’s Eve. phakisa malbon had a lockdown and a code al boarded for now be knocked down and then twenty eight. divemaster could then go to not know in February of twenty I days to melbourne sydney fell down. Certainly not as hard as it year then on the monday was meant to go to melbourne, which it hadn’t locked down In February. Yeah, that was another downside of 2009. 20 yeah, yeah, it is tough, but we just have to keep pretty positive. Yeah. So you know, we know that you’ve had some good success in cycling, but andrew, what’s your favorite sport? My favorite sport is fine, cooing. You know, not fighting for world. Well, I had to have one, I have two hockey and five covering like watching on TV. A fight going on to it. And I love hockey, and I have to take a big call before cooing. I didn’t take for ian. You are spot on angela when you said earlier that a sport is brilliant to keep in your mind and your body active and meeting people with such a great pleasure to be part of the community. And we’ve actually had a few that kind of topic or theme has come up a few times. Most recently of a britney award winning relistening love sport. But maybe not. Sometimes we say, I’m a big sports fan. People assume we’re talking about competitive, professional sports, but a lot of the time, I think the community level sport is so important for everybody to have something to celebrate and all the good people are coming hoplite. And I can talk to somebody who have won big award for a long good ten people in five can come to a body and all the olympic people and pay people in the world and just the other night working at forty nine for Nine. So I went to um and won eight to beat. Yeah. I mean you probably watched the first few games actually win this. Yeah. Yeah. Yeah. Yeah, I need a favor, a good for sport. And I want to mention dave, all the cat fighting captain. They’ve found dief and if they’ve all found diversion of wade veev and a lot of people who have where they’ve been and they’ve kind of one on paper, i’ll cop to go after people who have the V. And they’ve found different For anyone who doesn’t know it and staple it to the australian cricketing legend. And as you said, he was the captain of the australian team for a long time. Yeah. And Yeah. And the a dog fighting ring. fence for people who have to save or I tasmania melbourne, sydney cane. And yeah, the andrew a lot of put you on the spot when I ask you to cast your mind back to the gala dinner presentation, the seven years younger caber. And what was your, how did you find the event? Did you enjoy the event and what was it like to be announced as the winner of it was humbling on it? And I think it will find a buyer willing to be in the game we face on paper and in two, I know people all around dubai, and we are all winners. Nobody is not a winner or everybody involved wins. And I think to everybody in China they had no knife and no one word to everybody involved winner and I A fire to so many people who won awards or been on and you can’t speak for when they made that announcement and said, and the winner is Andrew bannister, what, what race through your mind at that point? Oh, um the, uh I, I won the people toy for fur and that out of the night, of course, that was the award. And it will be in the book about a second or two seconds of shaking in my chair. Yeah. Couldn’t And think for anybody who you know, night to meet my family, my friends, and where voice of say no night to me for people and volunteer. And I want to thank the two amazing lady, failla and nicole, nicole, me, if I see a lot of their voice today in melbourne. And cheryl kernot talk is the cream, came tin man at waverly tea. And she helped me with like I, I gave her a milf and all the marks i did. And yeah, we go back and forward And yeah, thank you to nicole and andrew and cleaned up that not given the choice of what the volunteer would. And they also won the raffle at their table when they won the prize of six bottles of wine or something. It was a good night for the bannisters. A hundred percent? Yeah, but, but my grandma darvin outcall, she gave it to my company coven. And over pay my dad and my mum and my sister could be a become a dog at all. And my feet to Put her name in the raffle. She had no idea of as a joke, as a prank. So who did she give it to? It’s funny now, I wish I was there at that event because I actually spoke to her afterwards. She was there and she said that it was maybe for us, we run them in each state and territory of australia and maybe that was because it was the last one. So they said it was the best, but that is the last one. Yes, we’ve successfully done it, but she said that the event was really special. Yeah, I can’t comment on that. The coal fire in spain to one very humbled and and er, thank you for a body night to me and all the work we have done for people who have where they’ve been today. Before we wrap up, I want to ask you a couple more questions. So ainger august 7th this year is world aids day. So I forgot a iv on red v dive on the twenty eight for a in the game. And v for a big call for twenty nine feet where yeah, so what was that you? I thought you mentioned all this earlier on that iv well p v in height take well ok. So that’s good. That’s a world we can use the 7th of August. Yeah. But we also celebrate world redesignate february. Yeah. Which encompasses events as well. Yeah. Yeah. So that’s really good because in some respects then you get to celebrate that as a way to sort of wider scale, but also on August 7th to, to focus on a given day. So is there anything that you’re planning to to do on August the 7th, the one that’s coming up, I’m going to month and I feel like I might be and hate to be a if I go and I in the morning I go for about 50 wide yeah, a fair website. Good. Well, if you were in melbourne, you probably have to worry a bit more, but in perth, i imagine sitting in front domingue now a big storm. And because of the rare times that thunderstorm, you look at my window and try to in melbourne. But that’s great. And if people, if they want to know a bit more about pedialyte, you mentioned this on Facebook. Is there a specific facebook group or page they should follow? Pva in height, phyo pavey, and double double dot TV, and support dot com for a wedding gervaise in the world. We have 13 million people who have read vaw in the world and seven thousand where they live in the world. More and more time to go on to the web. They’ve web website. Three million. Yeah, that sounds like a lot of people figure it if the 15th year of well 2015 and I got a big idea and for fandi Big ideas really in 2011 and 20 before covid where voice to try and the federal government want to know where the action page has come and how it’s in canberra. That sounds like it’s big news for people with a religion. Where where voices are to go, a theme moctar, tov awareness and support. care and support and wait and talk. Because of all these things, very important to bring awareness to people who have read the show. So it sounds like real voices would be quite good for people to follow in terms of on social media. And you have to get that information in the way it is sometimes. And I want one more thing I want to talk about your, your did your audience? Is it the way they’ve organized faith in Europe and that who started when they died 14 years ago and And yeah, and off in you know, night to me for what feeb for the long way they have the cut of the For one thing my name is in fanboy, before where dvds die next year, and off I think for a year or two. And we have boy Who you know, nice to me for their award. Andrew, please make sure when you get closer or after that ceremony. Let us know how you went on the achievement awards alumni group because we decided to take it the people’s choice that we can vote for you. We’d love to do that. I’d love to get behind you afterward to thank um. Yeah, it was a great honor to be told us about red roses. But what’s your model? I goffe motto one. The top one is giving back to me t. The fictional line in mind over matter, never work hard and the other one is every day, mac to be called every day, the new day and keep going forward. Don’t look back that pretty damn good motto is if you ask me and really beautiful stuff and I think we all like that advice on board and I think it will be a lot happier. Yeah, happier people. And of anybody ever find the nobody giffin, if we have different bayti or unknown different be a body is fine. And everybody on iv. On the same table and nobody is behind. But we’re all humans are on the same earth living together. Yeah, I love it. Andrew, the last thing I wanted to leave with is a do you welcome people to follow your journey on social media? Yeah, ma, I only got one thing in my entire campaign. My entire campaign i can I and I try for time be a double and fatma and take an accountant beautiful. That’s a public account. Anyone can jump on there and follow your journey. ajp and underscore as you said, frangipanis there and I’m just following you now. And one volunteer young achiever award winner. ahead of me, I forgot to fight the I want to thank the two amazing people who helped me in my life not to be put forward who work with me for 15 years. I couldn’t be happier where I am to die with them and don’t give and take to and all the people who helped me And or five free board members here in they are the board member for revoiced five. Yeah. Yeah, thank well, andrew, thank you for taking the time to chat with me today to tell me about world rare diseases day and day and absolute pleasure to meet you and to hear your story a little bit more and comment to stay in touch and keep following up on your journey. Thank you for our world today and of hard work. We all do for people coming up in the world to be the next day of of uh to thank. Thank you, andrew. I hope you enjoyed that interview. If you liked it or any of our other episodes, it would be great if you can write and review the inspirational australian’s podcast. It really helps us out if someone you know, needs a little taste of inspiration. Why not let them know about this podcast? And if you haven’t already, make sure you subscribe so that you won’t miss an episode. Join us each week as we talk with ordinary australians, achieving extraordinary things. You can always head to our website at awards, australia dot com slash podcast for more information and details on each guest. Now before we go, i’d like to thank annette our producer. Here’s a fun fact, and that is my mum and our other hosts, geoff, is my dad. This podcast is brought to you by awards, australia, a family owned business that proudly uncovers the stories of people who make a difference for others. We can only do this with the support of our corporate and not for profit partners as they make our awards programs possible. 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