We Are Power Podcast
The We Are PoWEr podcast spotlights voices and perspectives that need to be heard. Our weekly podcast, with listeners in over 60 countries, delivers PoWErful conversations that inspire, challenge, and empower... from personal life stories to business insights and leadership lessons.
We share diverse experiences, bold discussions, and real solutions. Whether you're looking for career advice, topical themes, or stories of resilience and success - this is where voices spark change.
We Are Power Podcast
Jo Milne’s Fight to Change the Future of Usher Syndrome
In this episode of the We Are PoWEr Podcast, we sit down with Jo Milne, founder of Cure Usher Syndrome, to talk about her mission to find a cure and amplify the voices of those living with Usher syndrome.
Jo shares her personal experience of being misdiagnosed, only to learn at 29 that she had been living with the condition all along. As someone who grew up partially sighted without a role model to look up to, she is now determined to be that person for others—empowering more people to speak up and embrace their identity.
Beyond her work as a mother and advocate, Jo discusses the power of support, from the people who helped her build confidence to her partner, who encouraged her to fully embrace who she is.
This conversation is a powerful reminder of the impact of community, resilience, and using your voice to drive change.
Find out more about We Are PoWEr here. 💫
Hello, hello and welcome to the we Are Power podcast. If this is your first time here, the we Are Power podcast is the podcast for you, your career and your life. We release an episode every single Monday with listeners in over 60 countries worldwide, where you'll hear personal life stories, top-notch industry advice and key leadership insight from amazing role models. As we Are Power is the umbrella brand to Northern Power Women Awards, which celebrates hundreds of female role models and advocates every year. This is where you can hear stories from all of our awards alumni and stay up to date with everything. Mpw Awards and we Are Power. I am delighted and thrilled to be joined by. I think we talk about inspiring and inspirational so often, but today I'm being joined by the wonderful Jo Milne, who is actually YouTube sensation. Was it 12 million?
Speaker 2:It was 12 million, and it was 10 years ago. It's just amazing how 10 years can just be over in a flash.
Speaker 1:yeah, and you are so accomplished in what you do not done. It's not past tense what you do and what you drive. How would you describe what you do in? I was going to say three words, but I think that's absolutely impossible, so why don't we try a sentence or two?
Speaker 2:Jo, there's a lot to talk about. I think my story just highlights that everybody does have a story and for me that's part of my story that I'm particularly very nice and it's all about the lack of awareness of the condition that I live with Usher syndrome. To just put it very quickly 16 years old I was told that I had Usher syndrome. Usher syndrome is the leading cause of genetically inherited combined deafness and blindness. When I was in my 20s I was told that I didn't have it and then it was confirmed when I was 29 that I did have it. But the actual diagnosis because it's three types of Usher one, two and three and the difference is just the age of onset and the progressiveness and the type of Usher that I was told I had I didn't have.
Speaker 2:I had a type one diagnosis, which means that I've actually been part and parcel since I was a child. So I've lived a life. I mean, I'm a mum to two children and I can just try to put myself in that position as a mum. What it must have been like for my mum to find out that a profoundly deaf daughter was actually going to be losing her sight. So it's been like a lifetime of. It's been like the unknown. We've been very unsure. It's been about the lack of awareness. Nobody knows what to expect and, most of all, there hasn't been any positive representation. There was nobody like me. You know what. There was nowhere to turn to, there was nobody I could look up to. So that's basically my life, in a nutshell, where I'm trying to change this. Now. I'm trying to change this so that people do know Russia, by raising awareness and hopefully to empower more people to speak up about their condition.
Speaker 1:And it's easy, isn't it, for the media, for the health service to label something? Yeah, it's a degenerative eye and hearing condition, but we can't just label things like that.
Speaker 2:Yeah, I think there's just a lot of, I would say, uncomfortable about disability. I think we need to normalise the conversations around disability, because disability is a huge part in everybody's life. I mean, one in four of us have a disability. You can have a short-term disability, you know, like if you look around our lives, there will be somebody that will love, somebody that will know that has a disability. And I just think sometimes we can be in danger of trying to label people too much, because there's not too much effort in just having empathy and kindness, because it's not about what you can do, it's about what you can do, and I think that goes right across the whole board of diversity. We're all different and that should be celebrated, shouldn't it?
Speaker 1:100%. You're a true role model and I think, by choosing to be visible because you could have not chosen to be visible, but you've chosen to say you know what. I've lived with this. I've done this for my family, because you talked about your mum, you know. But by you talking and creating the following and Who'd have thought 10 years ago, 12 million people would have watched your YouTube clip, which was when you got your cochlear implants, wasn't it? Vitted, yeah.
Speaker 2:That's it, because the story behind the cochlear implant, a lot of people didn't realise that it was actually because I'm losing my sight. So it was like I was losing one sense and I'm losing my sight. So it was like sort of I was losing one sense and I'm trying to gain another. And that's why that video was so emotional and so powerful, because it was just like thank you. I felt very cut off, very cut off from the world, because I've always said there's nothing wrong with deafness, there's nothing wrong with blindness. That can be celebrated. It's when the two come together. That's when it's very, very challenging and it can be very disabling. It can be very. It makes life, can be quite restrictive. So you really have to try to empower that and I think by the cochlear implant that was one of the first moves I made to try to improve the quality of my life. And well, wow, the reaction to it was.
Speaker 1:And you became a global spokesperson and voice of Usher within a short period of time. That must have been quite overwhelming, yeah it was very overwhelming.
Speaker 2:I was just thrust on a global platform and I think that's when I realised there was a certain sense of responsibility. People were listening and it was placed upon me to share my story, because how would people know, how would people learn about that if you don't speak up? And I think once I started to speak up, it was like the wheel became in motion for the awareness raising and a lot had happened in the last 10 years. I would like to think that there is more awareness diversity syndrome happening now and what would you shout out there if you could have that magic wand?
Speaker 1:what would you ask for now, because you can have more than one ask, but let's the magic one.
Speaker 2:Well, I founded a charity in 2018 Cure Usher Syndrome and the words say it all. Now it's not unrealistic expectation for a cure for Usher Syndrome. It goes back to the lack of awareness. The lack of awareness means that we'll have lack of funding and by speaking up, carrying on what we're doing that is my way so that there's a cure for Usher syndrome and, meanwhile, just more awareness, more awareness of the condition. Now, when we talk about Usher syndrome, there is at least 11,000 people in the UK live with Usher syndrome. Now, that's like the number is very similar to cystic fibrosis, for an example. Now, 11,000 people.
Speaker 2:Cystic fibrosis. Everybody knows what it is, just like the basics of what the condition is. It's rare, but it's not that rare. You know somebody of the condition and that is what I would like, if I'm having two wishes here that it becomes a global effort that people know what Usher syndrome. For an example, I have a mobility cane with a red stripe and it is saying for a guide dog. A guide dog can have a red and white checkered harness and one with a mobility cane. The red stripe signifies that we have a hearing loss too. So even just to get that into the public domain of awareness raising would be fantastic.
Speaker 1:Oh, and it's been recently. Usher Syndrome's recently been in soap opera, hasn't it? Yes, it has, yeah, In EastEnders.
Speaker 2:Yes, it was featured in a storyline on EastEnders and that was just one of the most incredible things that could have happened in TV and media, because when you've got just a massive audience, we're talking about, millions of people are hearing the words SE syndrome, and not just that. I think it gives that feeling that you're not alone, that there's a community out there. There's a lot of people out there individuals, families. We're all living our lives and just to get them words out there, it's like yes we're here we're part of the world too.
Speaker 1:And for people that are interested and passionate and driven and motivated by your drive and your inspiration. What can individuals get involved in? Absolutely need funding, absolutely need awareness, but how can people get involved?
Speaker 2:Well, I would like to think that people could get involved with maybe like fundraising efforts as well, because it's all about the funding People just got behind, I think like a nationwide effort. I mean, in June I'm going to be this is one of these bonkers things that we're doing for fundraising. It's like why? Why do we do it? But this is what you do, you set yourself a silence. But in June I'm going to be doing Scarfell Pike, but this is during the night, so we set off about midnight and we get to the top of the mountain to see the sunrise and there's like a wonderful metaphor behind it and it'll be quite moving. It will be extremely silent there and for me it would be great if everybody could get behind me, even just give a few pounds, the price of a cup of coffee, If somebody could just help me with that, that would be incredible too and it would give a lot of hope to families and individuals out there.
Speaker 2:Well, we will put the details in the notes that go along with it.
Speaker 1:Now you said bonkers. Now I've heard you on a few podcasts. I've heard you are a media spokesperson out there for Curaçao and for disability. What's the most bonkers thing that you've done? Because I've heard you use that word a few times.
Speaker 2:Oh, bonkers, I think when the story just got thrust into a global platform, it was like people were doing songs, people were talking. I even had a song written for me and this was an Irish band called Take your Sweet Time, and if you listen to that song, that song is those moments that even some quotes about what the audiologist was actually saying to me. So that was very, very moving. But it was just like the travel that was involved as well.
Speaker 2:I was in Japan and I was approached by the Oden family, which is a singing Oden family, because they're touched by deafness as well, and we were invited out of Bangladesh and, with generous sponsors, we were able to provide 500 pads of hearing aids to like children in Bangladesh and just the opportunities that they were given was absolutely incredible. And it did actually win a National Television Award for the best factual documentary. And I think what was so emotional about that documentary is that it captured those moments, the same kind of moments that when my video went viral, and it's just those first few seconds of experiencing sound and it's just, it's just incredible and I've got two bits I want to pick up on there, because one thing is I know you were an ambassador for deaf children, aren't you?
Speaker 1:because obviously you haven't got enough to do with running your own charity, being a spokesperson, being a role model, but that's that's really important, because that's all about leading, about changing perceptions, isn't it of that hidden disability which we talked about right at the start? You can't see every disability.
Speaker 2:That's right. I think there's a lot to be said. Like I said before, I think disability should just be them confiscating to be the norm, because there's a lot of invisible disability. Some people don't want to disclose their disability, and that's absolutely fine as well. It's not just all about what you can say. For an example, my mobility cane. Some people like to keep things private. You know, like people shouldn't have to disclose their disability if they don't want to. That is why it's just about people. It's just we're all people and we all have our differences. And that's just about people. It's just we're all people and we all have our differences and that should be celebrated.
Speaker 2:And I'm also very passionate with, like the best hearing healthcare. It's like I said, there's nothing wrong with being there. It's when you're losing your sight. We need to discuss the options that are available, whether it's better hearing aids, cochlear implants, etc. Etc. So we're just trying to take control. I think we all have a certain responsibility within ourselves to try to make the best of our lives. You know just what can I do to make this better. If you're not happy about something, or if you feel like you're struggling, talk to somebody. In my case, it was like I'm really struggling with communicating, and that's why I decided to have a cochlear implant.
Speaker 1:And you mentioned before the Take your Sweet Time, which was a song that was written, wasn't it for the video? But I know your friends made a playlist, didn't they? For you, do you have a favourite song on there? Was that like picking your favourite friend?
Speaker 2:I think for me, because, like the playlist, there was 40 songs and it was presented to BBC Radio 6 and Lauren Le Verne and what it was it was like it was the build-up to restriction for the cochlear implant. It was like all the six music listeners were waiting to see if it would be successful, because the way the conversation was going it was when Joe's implant gets switched on, there's a possibility that you may hear music. So I think it just got the nation talking about well, what song, what song would you choose for someone? So that's why I decided to pick a song from every year of my life, so it had like a significance of the year. So for the one that stuck out for me was because it was the first one that was played to me and it was elbowed one day, like this and it's just a bit where you get the violin playing and just the head on my arm to stand up.
Speaker 2:every time I hear that song, yeah, wow.
Speaker 1:And you've got a young family and then, of course, you've got Super Steve, right? Yeah, I do. Now Super Steve is here. He's feeling all awkward and shy because he's that kind of guy, but we met Steve a few weeks ago when you obviously came along as finalist and future list at the 9th Northern Power Women Awards. It was glorious to see you and to chat with you, but he's a good guy, right?
Speaker 2:Yeah, he's a good guy and I think for me I'm a little bit late to the party. You know, we've got like young children my parents are starting to be, all my friends are starting to be, or my friends are starting to become grandparents and vice versa. But I think a lot of it was to do with my personal journey. I think one I'd accepted that I had this diagnosis. I think it's like I started to build my confidence. I began to say how can you expect someone to love you if you don't love yourself? And I think that for me it was like I built my confidence. And then bingo, there he was. It was very much the eyes across the crowded room when I met Steve.
Speaker 2:And Steve had always encouraged me to be myself, to embrace even my cane. He'd always said you know where's your cane? Get out your cane, use your cane. It's part of you. So I'm very lucky to have a partner that didn't want me to hide my disability. He wants me to embrace it and, like I said, hopefully it's just become the norm and the cane doesn't stand out as much because it's just like a part of me. And yes, we were married within a few years and we'll have two beautiful children who are five and seven years old. Five and seven.
Speaker 1:And I know sort of taking back into sort of the challenges around Usher syndrome. I know one of the things that I heard you and Steve on a podcast, because obviously you've got a take in with you sometimes on the pod, you know, have his voice heard. But one of the things I heard is when when I think it was during your second child, because the shifts will change yeah, there's, there's there's a kind of rebriefing of information because of the lack of awareness of Usher yeah but having Steve there the whole time was critical because otherwise you would have lost some of that communication just purely through lack of understanding and awareness of Usher right.
Speaker 2:Yeah, now, steve's background is that Steve was a rapid response paramedic, so Steve was very used to the healthcare setting and I would say just the whole experience of giving birth to my children. It was a beautiful moment, don't get me wrong, but it could have been more beautiful if I didn't have to self-advocate and explain about my condition and Steve tried his best too to explain that and I think it's a life lived for me. Now I think I've been put in a lot of different scenarios and situations that I can understand about the lack of awareness and, I think, the experience of becoming a mum twice. I think that was when it was the final straw and it was like we need to do something about it and my ultimate I would say my ultimate drive to find this out yeah, and you talk about that self-advocacy piece, things that at the start really it would have been.
Speaker 1:Would it been simpler to to not and just gone? Yeah, and other people will do that. Absolutely. What made you the the other?
Speaker 2:I think for me um, again, it's just because I've become a mum. The state children are watching you all the time. You know, I can see it particularly in my daughter. She's only five years old. She's watching every single thing I do, every move that I make, and she's my go-to because I know she's watching me. So, for an example, having a mum with a zero sensory load, it's very normal to her. You know, like in a normal day day we live, we laugh, we love, we learn, we do all those things. So if all of a sudden I start doing something different, it wouldn't make sense to her, because that's the very thing you know, like, just try. I think looking at the world through a child's eyes is very, very important. I think that's the point I'm trying to make is watching you. So it's a bit like you live your life. But if the world is watching you and that's how I believe to be living my life now through the eyes of my children- what do you think your superpower is?
Speaker 1:My superpower, yeah, and you've probably got more than one of those, more than one wish, more than one of those More than one wish, more than one superpower, superpower.
Speaker 2:I think that people in my life might say a very different thing, but I think, for me, the resilience, I think I believe that, well, I could go back to maybe some of my grandparents' quotes where they say you know, where there is life, there is hope, and I always think as long as we've got well, we're healthy. Also, that might be contradictory to what I advocate, for I do have my health. I'm very lucky to be happy and healthy, but never give up, keep going.
Speaker 1:And what is next for you? Because you're not not stopping any time soon, are you? It's the North East genes. I know that. Yeah, I think now.
Speaker 2:If you had asked me this last year I would have thought things were settling down, but I think I've realised things are only getting started. There's been like a lot of interest in my life story. I think people want to know more and I think I have that passion to carry on because I can see the difference that it makes when I'm on it. Sometimes it's not nice and sometimes it's empowering and it's positive, but it makes a big difference when people know what to expect. And again, it's just raising awareness and not feeling so alone.
Speaker 1:And again, it's just raising awareness and not feeling so alone. Jo Milne, your spirit, your can-do attitude, I love that. It's all about what you can do as opposed to what you can't do Life for living, simone, and your vibe is absolutely glorious.
Speaker 1:Thank you for being a super Northern Power women and a true inspiration, and a big high five to Team Steve over there and the kids as well. Thank you so much for joining us today. Thank you, subscribe on YouTube, apple, amazon Music, spotify or wherever you get your podcasts. Leave us a review or follow us on socials. We are Power underscore net on Insta, tiktok and Twitter, or we Are Power on LinkedIn.
