Podcasts about There She Goes

Today's Song of the Day is “There She Goes” by Curtis Harding.

Breakbot Feat. Irfane - Baby I'm Yours Yazoo - Situation Dua Lipa - Houdini Freeez - I.O.U. Miami Sound Machine - Dr Beat David Bowie - Let's Dance The Belle Stars - Sign Of Times Barry White - Can't Get Enough Of Your Love Babe Justin Timberlake - Can't Stop The Feeling P!nk - Never Gonna Not Dance Again Sabrina Carpenter - Taste Simply Red - Money's Too Tight To Mention London Beat - I've Been Thinking About You The Rolling Stones - Mess It Up Freak Power - Turn On Tune In Cop Out Smash Mouth - Walkin' On The sun Talking Heads - Psycho Killer The Lightning Seeds - Pure The La's - There She Goes

Everyone knows the hit track “There She Goes,” a song that sounds like it has always existed and emerged into the world fully formed by the hand of God. Liverpudlian band The La's made that perfect song, and according to the many musicians it influenced, including Oasis' Liam Gallagher or our guest, Ben Gibbard of Death Cab for Cutie and The Postal Service, a nearly perfect album, and then basically never put anything out again. Join Yasi and Ben as they talk about one of the most interesting, mysterious, and secretly influential bands from the UK.  EPISODE PLAYLIST: Listen to the songs we talk about HERE CREDITS: Host: Yasi Salek @yasisalek Guest: Ben Gibbard Producer: Liz Sánchez  Audio Editor: Adrian Bridges Additional Production Supervision: Justin Sayles Theme Song: Bethany Cosentino Learn more about your ad choices. Visit podcastchoices.com/adchoices

Programa #247 de la séptima temporada de Mineral, el programa realizado en iPOPfm para poder disfrutar de la música que cuesta encontrar en las ondas. Centrado principalmente en el indie y post-punk, también entran el electro, el pop y el rock. En su séptima temporada, se emite cada miércoles de 21 a 22h y está dirigido y presentado por #bluetonic. Han Sonado: Zero Azúcar - No mires a los ojos de la gente. Disc: Zero Azucar. Gener 2025. Brigitte Calls Me Baby - Impressively Average. Disc: The Future Is Our Way Out. Agost 2024. Color Filter – Lullaby. Disc: Sleep In A Synchrotron. 1998. Radiohead - Street Spirit (Fade Out). Disc: The Bends. Març 1995. The La's - Feelin'. Disc: The La's. Octubre 1990. The La's - Son Of A Gun. The La's - There She Goes. The La's - Timeless Melody. Gene - Haunted By You. Disc: Olympian. Març 1995. Gene – Olympian. Gene - Sleep Well Tonight. Elastica – Connection. Disc: Elastica. Març 1995. Hotline TNT; DJ Sabrina - I Thought You'd Change (DJ Sabrina The Teenage DJ Remix). Somersault EP (Remix). Juliol 2024. Isaac Delusion - Hey, honey. Disc: Lost and found. Juliol 2024. Isaac Delusion – Internet. Baden Baden - Post romantique. Disc: La nuit devant.

Label: Columbia 43678Year: 1966Condition: MLast Price: $40.00. Not currently available for sale.This is one of this group's finest singles. It's not only got the familiar Garage-style hit on the A side, but you'll find a neat, catchy, Beatlesque rocker on the flip. Great package! I'm glad to see Dave Marsh includes it in his list, because if it weren't there it would definitely get 2 stars from me! :-) I hope you enjoy the mp3 snippet as much as I do. Speaking of which, fans of short songs take note: "There She Goes" has a clock time of only 1:45! Note: This beautiful copy comes in a Near Mint picture sleeve, which has no notable flaws. This vinyl pressing has Mint labels and pristine sound.

An ideal pop song that was far enough ahead of its time it got to come around again for a second try, and a cover with all the right bits and pieces. There She Goes, originally by The La's, covered by The Wombats.  Outro music is Sweet Emotion, by Aerosmith. And we promise that makes sense. 

This podcast episode is part of Afar, A Retrospective. As part of Afar's 15-year anniversary celebration, this episode from our sister podcast, Travel Tales by Afar, was selected as one of our favorites. We hope you enjoy it as much as we do—and stay tuned for more archival Travel Tales episodes from September - December 2024. Explore more of our favorite stories over the years at afar.com/fifteen. “If I travel to you, will you give me lessons?” When former child prodigy, Lavinia Spalding, emailed the biggest female flamenco guitarists in Spain, she was shocked when they all agreed to teach her. In this episode, she follows an abandoned dream to Madrid, Granada, and Barcelona, Spain to immerse herself in the new world of female flamenco guitar.  Follow Along with Revolutionary “Tacaoras” In this episode, discover:  What flamenco means to the women who are paving the way for female flamenco guitarists.  The origins of flamenco and its important elements.  Some of the biggest names in flamenco guitar from Paco de Lucía to Antonia Jiménez  Breaking Into the Boy's Club. Don't miss these transformative travel moments:  [02:07] Following and foregoing my father's flamenco dreams.  [05:40] The mysterious origins of flamenco. [06:36] A kindred spirit and a familiar melody with Antonia Jiménez. Strumming in the Spirit of “Duende” Lavinia Spalding is the editor of The Best Women's Travel Writing and co-hosts the podcast There She Goes: travel stories told by the women who wrote them. But at one time, she believed she was destined to become a “tocaora,” a female flamenco guitarist.  In this episode, she follows in her deceased father's footsteps by traveling to Spain to learn flamenco guitar. Antonia Jiménez, Pilar Alons,o and Marta Robles, some of the most prominent female flamenco guitarists in Spain, are her guides into “duende,” the heartbeat of flamenco that transforms suffering into passion.  Resources:  Read Lavinia's original story.  Explore Lavinia's work on her website.  Listen to this playlist that features music by Marta Robles.  Watch these performances by Pilar Alonso and Antonia Jiménez. Be sure to subscribe to the show and to sign up for our podcast newsletter, Behind the Mic, where we share upcoming news and behind-the-scenes details of each episode. And explore our second podcast, Travel Tales, which celebrates first-person narratives about the way travel changes us.

As 2024 comes to a close, we take a moment to reflect on what has been a busy year at Genomics England and in the wider genomics community. Throughout the year, guests have joined us to discuss groundbreaking research discoveries, important ethical considerations, and share their personal stories. It was also a year of transformation: we rebranded our podcast as Behind the Genes, welcomed Dr Rich Scott as our new Chief Executive Officer, and launched the Generation Study, in partnership with NHS England. The Participant Panel also saw changes, with Kirsty Irvine stepping into the role of Chair and Adam Clatworthy and Helen White becoming Vice Chairs. In this special end of year episode, Adam Clatworthy, Vice-Chair of the Participant Panel, sits down with Dr. Rich Scott, CEO of Genomics England, to look back on the highlights of 2024. Together, they revisit key podcast moments, reflect on research discoveries, and share insights into the evolving world of genomics. Below are the links to the podcasts mentioned in this episode, in order of appearance: Celebrating genomic breakthroughs - Insights from the Festival of Genomics Shining a light on rare conditions How has a groundbreaking genomic discovery impacted thousands worldwide? How can we work in partnership towards a new era of genomic medicine and research? How has design research shaped the Generation Study? How can we bridge the gap between diverse communities? Can Artificial Intelligence accelerate the impact of genomics? "It's really important that we just continue to bring that patient and participant community on that journey, just to ensure that they really understand the full benefits. And we've talked about that on the episode today. I know that the panel has always encouraged the Genomics England team to look at its boots while shooting for the moon. I really like that phrase just to make sure, look, we can't forget where we've come from to make sure we're taking people on that journey" You can download the transcript or read it below. Adam: Welcome to Behind the Genes.  Rich: Our vision at Genomics England is a world where everyone can benefit from genomic healthcare, thinking about how we ensure the lessons we've learnt through our diverse data programme is embedded across all of our work.  So that word “everyone” applies to people in lots of different ways, different communities people come from, different socioeconomic backgrounds, making sure that equity is baked into all of our work.  And there's real opportunity for genomics to play a broader role than in rare conditions and in cancer, we're proud of the impact we're already having there, and we should really look to the future.  Adam: My name is Adam Clatworthy, and I'm the Vice-Chair for rare conditions on the Participant Panel at Genomics England.  On today's episode, I'm going to be joined by Rich Scott, CEO of Genomics England.  We're going to be taking a look back at the key milestones from 2024 for Genomics England, and really discussing our hopes and aspirations for the year ahead.  During this episode we'll also hear from some of our guests we've had on the show this year, who have helped shape our discussions and shared some of their most impactful moments and insights.  And if you'd like to listen to more like this, then please subscribe to Behind the Genes on your favourite podcast app.  So, with that, thanks for joining me, Rich, how are you doing?  Rich: I'm great, thanks for hosting today, I'm really excited about it.    Adam: So, Rich, it's been a pretty exciting year for you, you've taken on the CEO role at Genomics England full-time, so why don't you just start by telling us about how those first few months have been for you?  Rich: It's been a really exciting year, I think for us overall at Genomics England, and obviously personally taking on the CEO role, which is an enormous privilege.  I've been at Genomics England nine years, and I think both a privilege and a real responsibility to take on the role.  To think both about how we continue to honour the commitments we've given our participants and those we work with, and to think about the future, where we might go together, what evidence we need to generate, what our systems need to support.  So it's been great taking on the role, and thinking about that, both the present and the future, and there's been lots, as we'll talk about, there's been lots going on.  Adam: No, that's great.  And I must say for myself as well, I started the Vice-Chair role at a very similar time to you early in the year.  When I started, we were in the process of looking for our next Chair.  Obviously, we had Jillian and Rebecca, both standing down, after many years in the role.  They've been there from the start, really guiding the Panel through this amazingly successful period.  But for me, I've really enjoyed working in partnership with Helen, who is our Vice-Chair for cancer.  It's been a real partnership, in terms of filling in for that interim leadership role.  And we wanted to make sure that we weren't just caretakers, we were really continuing to be actively involved in a lot of the discussions that are happening with your colleagues across Genomics England.  Very much leading the Panel, and starting to have those important discussions around, where does the Panel go next?  And what's our strategy for the next two to three years?  What are the key areas that we can drive real value and impact, in line with your own milestones at Genomics England?    And, of course, I've just loved getting stuck into chairing the Panel meetings as well, for me, that's the best part, is really bringing together these amazingly diverse and passionate people.  With so many different personalities, lived experiences, and a combined passion for just taking this forward together, and making sure that the benefits of genomics really impact, and that's felt by the wider community itself.  So there's been lots of highlights to recognise this year, a real stand-out for me has to be the Genomics England Research Summit, from what I understand it was the most attended event to date.  And it was just so good to see that a lot of the Panel were front and centre across that event, sharing their stories, having a really active role, whether introducing speakers, or telling their own journeys as part of the Q&A sessions.   I myself was really privileged to be on stage with Baroness Nicola Blackwood, literally nine days after I officially started the role.  So it was great to just dive in at the deep end, get in front of an incredible audience, and just see that the broader Panel was front and centre of the event itself.  And it was just great to see how popular the event was, many more people coming to have a chat to us on the stand than would have found us before, so, all in all, a really big highlight for myself.  So, for you, Rich, are there any other highlights that you want to call out for this year?  Rich: And first to say, absolutely agree with the Research Summit being, you know, a highlight.  The diversity of the discussions that we had, it's one of the things we enjoy most about thinking about creating the summit, as you say, involving the participants very much at the centre.  Like, physically at the centre of the room, for people to come and talk to participants and hearing stories.  And then really seeing how over the years we can see the impact growing, and having talks, whether it's about individual findings, or big research studies.  So the final talk of the day was from Charlie Swanton.  He was talking about some really exciting work that his team have done in our National Genomics Research Library, making a really important discovery about extra chromosomal DNA in cancer, and that's now been published in Nature.  And then right next to him, we were having a policy talk from Sam, who's the CEO of NICE.  And you can see the range of things, the sorts of evidence, sorts of conversation, we need to have, so that was really fantastic.  I'd call out one discovery this year that maybe we'll come back to, and one other big highlight.  So I think the big discovery this year was the discovery of this piece of non-coding sequence in the genome called RNU4-2, which turns out to be pretty much the most common cause of developmental disorders that's been discovered.  And it's just so exciting to see that having been discovered in the National Genomics Research Library.  And then the news, the knowledge spread, across the world, and family support groups coming together to understand and learn more about what that means for them.  So that was, I think, the discovery over the years at Genomics England that's touched me most, seeing that story.  And I'd say for us, organisationally, another big highlight has been the launch of our newborns programme, the Generation Study.  So as lots of people listening will know, we've been actually thinking about what the questions underlying this study are for a good number of years, doing a lot of preparatory work.  Actually, before we even started, setting up public dialogue jointly with the National Screening Committee about what the public were keen to understand and the appetite for research in this area.  And then we've been spending several years designing the study, working with the NHS how to design, safely launch it, National Screening Committee involved all along, and working with patients and the public to design it.  And this year now launching the study at a public launch, just a couple of months ago, by the time people are listening to this, and at the time of recording, more than 2,000 families have joined the programme.    So really exciting, us exploring a really big question for genomics, about the use of whole genome sequencing in newborn babies.  Whether that should be offered to every baby at birth, primarily driven by that desire to do better for those children born with treatable conditions, where genetics, genomics, can be a way in to finding them, but doing that at the right pace, and very much in a research setting.  That's been a real, a moment, I think there's been so much work on the path to it, but it's right to sort of celebrate these staging posts on the way.  We're early in the programme, there's lots to do, lots to work through, lots of evidence that we'll accrue, but it's really exciting to be at that staging post.  Adam: No, absolutely, and from my side, I think seeing all of the media pick up for the Generation Study launch, you could really see the excitement in the wider kind of community.  Seeing it shared on social media, obviously those part of the 100,000 Genomes Project, seeing things like this.  It's like they can see the tangible outcomes of all the work that they've done as part of that initial project, and seeing how those learnings are then taken onto this new study.  So we'll now hear a clip from earlier in the year from Louise Fish, who is the former CEO of Genetic Alliance UK, who shares her thoughts on the potential of the Generation Study.  Louise: The Generation Study is looking at 200 conditions and whether it's possible to screen for them.  And for all of those 200 conditions, it's a really exciting opportunity to see if we can learn more.  Both about the potential to understand and develop treatments early, but also just about the chance to understand the natural history of that condition so much earlier than we do at the moment.  And I think that's it, it's that understanding the natural history of the condition really early, and understanding how a family can be helped, through all aspects of the condition, which is giving people most excitement I think, alongside the potential to develop treatments.  Adam: So now, let's look back at the priorities for Genomics England for 2025.  Now, Rich, would you like to just take us through some of the things you'll be focusing on next year?  Rich: Yes, one of the things that we've been doing this year, but also actually in the year before, is really looking to the future.  And saying, where might we be in terms of genomics really living up to the impact it could have, if we collectively, in the UK and working with international partners, sort of get things right?  And that's very much about balancing the realism of where we are, and the impact we're already having, and being proud of that, and then getting that same sort of ambition and realism casting to the future.  And I'd say, I think there are two really broad themes.  I think the first thing is, we're enormously proud of the impact we've had already for families with rare conditions, and people with cancer, and that impact will continue to grow in the coming years, in those areas.  And in the next few years, that's where the biggest impact of genomics will continue, and the rare disease programme we have thinking increasingly about how we support the generation of evidence and pathways that lead to rare therapies.    So building, getting better all the time at finding diagnoses, which is still a long journey we're on, and continuing that work.  Increasingly thinking about how we can support therapies, and in cancer, again, playing a better role in cancer, both by driving efficiency in diagnostics, and efficiency in identifying where therapies enabled by genomics can be targeted.  And we see lots of different examples of that, clinical trials is a big area where we hope to have more impact in the future, but also thinking about some of the novel therapies that are there, both for rare conditions, but also, for example, the cancer vaccines.  And I think we're uniquely placed in the UK, because of our partnership at Genomics England with the NHS, and the broader science ecosystem, to have that impact.  So that's the sort of like continuing very much where we are, but really pushing those boundaries.  And then also, if we look to the future, to say, what role could genomics play?  And we, as you know, our vision at Genomics England is a world that everyone can benefit from genomic healthcare, and I think that plays out in a couple of ways.  Firstly, thinking about how we ensure the lessons we've learnt through our diverse data programme is embedded across all of our work, so that word “everyone” applies to people in lots of different ways, different communities people come from, different socioeconomic backgrounds, making sure that equity is based into all of our work.  And then also, to say there's real opportunity for genomics to play a broader role than in rare conditions and in cancer, we're proud of the impact we're already having there, and we should really look to the future.  And as we set out where we think what evidence is needed and where we need to learn what the digital infrastructure that we build and others build, need to build that to support that, we look across a few different areas.  But really you can see genomics playing a role across the lifetime, in different places in different roles.   To pick one really powerful example is something people often refer to as pharmacogenomics.  Which is a medical term for what boils down to look at a person's DNA sequence, that's the genomics bit, and making decisions based on what drug to give them, what drugs to avoid, or perhaps what dose to drug to give them.  Based on, for example, the desire to avoid adverse drug reactions that people might be at high risk of, and you can identify that risk looking at the DNA.  That is one example of genomics playing a role in being increasingly sort of preventive, getting away from disease, getting upstream of disease arising, or harm arising.  And there are other opportunities in common disease as well, sort of casting forward to what that impact might be, and we feel that genomics could play a role, really broadly, across healthcare, in probably as many as half of all healthcare encounters.    But what we need to do over the coming years for that to potentially be the case is we need to build out the evidence, and we also need to understand what digital infrastructure we need, to make that a possibility.  So that the information is there in simple format, for patients and the public, for their GPs, for their pharmacist, for people in any speciality in hospital, not just sort of rare disease clinics or in cancer, as we are at the moment.  And so very much we're thinking about the programmes that we and others could run to ask some of those questions, to think about what we need to build out.  We feel that the UK's uniquely placed to develop that evidence, so that we can make the choices about how genomics is used, and so we can be ready to embed it.    And it really aligns with that shift that we see and we hear, for example, in government being talked about, when we're looking about sort of the shifts that the NHS sees as essential.  You know, increasingly preventive, increasingly digital, increasingly in the community, and that point of sort of getting upstream.  And genomics is going to be an important part of that.  And we at Genomics England are really excited about the role that we can play, whether it's through the digital infrastructure we build, whether it's the programmes that we run to develop the evidence.  Or whether it's through the ethics and the engagement work, the work with the Panel, and the work with the wider public, to understand how we might develop this evidence, what people are comfortable with, what the expectations are.  And I think that, pulling that together is complex, it's really exciting to think about how we do it.  I think we in the UK are uniquely placed to take advantage of that.  Adam: That's great, and I think the pharmacogenomics piece is fascinating.  I mean, you hear many stories of people having adverse reactions to certain medications, and you wouldn't even think it's something that may be linked to their genetic makeup.  It's so important that we take people along that journey, around what the benefits are, the ethics, to make sure that people really understand the journey that we're making and what the potential impact could be.  Whilst there's lots of amazing new areas to develop into, a key focus for us on the Panel is really continuing to demonstrate how the 100,000 Genomes Project participants continue to have an impact, and they're helping shape a lot of these developments.  So they generously donated their data, it not only helps Genomics England develop the systems and services that now benefit many families, but it also continues to drive that scientific and technological enhancement.  So it wasn't just about reaching that 100,000 genomes, that project was really the starting point, as it were, it's not the finish line, it laid the groundwork for a lot of these developments.  So it's about how do we focus on maximising the benefit for those participants over their lifetime, not just at that one point in time.    We know genomics is evolving so rapidly, what you can glean from a genome today is far more than what was possible in 2013.  And we know the Diagnostic Discovery team is continuing to analyse the data for participants in the project based on these new advances, the team led by Suzi (Walker), who's doing some amazing work there.  Using all the latest tools and enhancements, just to make sure that those participants are really benefiting from that learning.  So, we just need to make sure we stay close to that wider community, and just ensure they're not forgotten, that's really a key north star for us as the Panel.  And something that we've been pushing is better ways that we can help to communicate the ways that you're celebrating these successes, providing regular updates on research progress, offering personalised reports based on the latest findings.  And it's all about providing them with that hope.  Some people may never get a diagnosis, but it's about giving the hope that one day they might get that phone call out of the blue, so it's about giving the hope that those possibilities are out there for others.    So we're now going to shift gear onto hearing from Shaun Pye, who is the father of Joey.  She was diagnosed with DYRK1A syndrome, which is a rare chromosomal disorder, which causes a degree of developmental delay or learning difficulty, at the age of just thirteen.  In this podcast episode, Shaun and his wife Sarah told us of their journey to Joey's diagnosis, and how their role in writing the BBC television comedy drama series, There She Goes, has helped to shine a light on the rare condition community.  Shaun: Then the opportunity came along with 100,000 Genomes, and we signed up immediately.  And then that, they did that, and it was a few years before that went through the system, and then we had, out of the blue really, we were asked to go and see a geneticist, and we had no idea that this is what it was.  I honestly thought it was just a routine sort of, we've got a few more theories or something, and she just said, “We've found out what it is.”  And it's like, that moment is, well, we tried to describe it in the TV programme, but it is quite hard to describe what goes through your mind, when after thirteen and a half years somebody suddenly says, “Oh, by the way, that thing that happened with your daughter, we've worked out what it is.”  Adam: So here, Rich, did you want to provide some updates around future progress, particularly in diagnostic discovery and expanding the research?  Rich: When we're looking to the future, we're looking sort of in two areas.  How we can build the impact we're having today for families with rare conditions and cancer, and that very much includes the participants in our programmes, 100,000 Genomes, those through the NHS Genomic Medicine Service, who joined the National Genomic Research Library.  And we've seen, I think the number that I'm most proud of at Genomics England is that number of diagnostic discoveries returned to the NHS, which has just hit the 4,000 mark.  And for those less familiar with the terminology, essentially what that means is where either researchers or the internal team at Genomics England have identified changes in the genome data, that with new knowledge, often with a fine tooth comb, it's considered likely that that is the answer to the cause of the rare condition in that person in the programme.  So that's 4,000 of those returned to the NHS.    And that tells you a lot about where we are for families with rare conditions, and I think there's two points here.  The first one is, we've got a long way still to go to do what we want to for families with rare conditions.  I'm a doctor and still see families in my clinic once a month at Great Ormond Street, even with the incredible advances we've had over the last particularly 10or 15 years, with the changes in sequencing and analysis, we still find an answer for the minority of families.  So that number is growing, and we're really proud of how much better we've done, and there's a long way left to go.  And the really critical thing is designing a system which we're so lucky with in the UK here, where we can continue to learn.  And that's not just for learning for the knowledge of people who might encounter the health system in the future.  It's to learn for those people who've joined the National Genomics Research Library, who've already trusted us to be the custodians of their data, and to do better in the future.  And that's what our diagnostic discovery work really aims to do.  And sometimes that's about new gene discoveries.  So all the time new things are being discovered each year.  And if you look at the DNA code, if you like, boil it down very simply.  99% of it is what we call non-coding DNA, I'll come back to that, about 1% is the genes, which if you like are sort of the books in the library of the DNA, overall DNA code, that we understand relatively well how they're read by the body.  The bits in between, it's a bit of a funny, well-spaced out library this one, that's the 99%, actually we've had very little understanding of most of that code in between.  But we're beginning, and particularly this year, to gain an understanding of how we might interrogate some of those pieces.  And not all of the answers lie in that non-coding DNA, there's lots of answers still left in genes that we don't understand well.    But one of the examples I mentioned earlier, and in fact the thing, the single discovery I guess which I'm most proud of having happened in the National Genomic Research Library is this discovery of this non-coding region called RNU4-2.  Which is a funny, like technical series of letters and numbers, but basically it's a very small patch of the whole DNA code.  Where this year, scientists discovered actually about 60 patients in the families in the National Genomic Research Library where that was the cause of their child's developmental disorder.  Actually, that knowledge has really rapidly spread across the world.  So I actually saw on social media at the weekend, from one of the scientists involved in the discovery, that the family support group that's been set up for what they're calling ReNu syndrome, which I think is a lovely name in itself, speaks to that word hope that you mentioned, Adam.  There are now 248 members of that group, and that's how fast that knowledge spreads across the world.  And what we're doing is thinking how we can support those discoveries more broadly, and non-coding DNA is one of those areas where that growth is, but it's not the only one where we're looking to support things.  But it's so exciting, and I think it gives you a sense of the scale of progress that is left to make.  And I think a really important point is that remains a really important area of our focus, it's not about moving on and looking just to the future, but we need to keep working for the families who are already part of our programmes.    Adam: That's incredible, that 248 members in such a short space of time.  And I love the ReNu name for that, I agree, I think that's a fantastic way of positioning it.  Earlier this year, we heard from Lindsay Pearse, whose son Lars received a diagnosis through that groundbreaking discovery of the genetic change in the RNU4-2, or ReNu gene, which was made possible by whole genome sequencing.  She told us what the diagnosis meant for their family.  Lindsay: This feeling that, like, we've been on this deserted island for eight years, and now all of a sudden, you're sort of like looking around through the branches of the trees, and it's like, wait a minute, there are other people on this island.  And in this case, actually there's a lot more people on this island.  Yes, it's very exciting, it's validating, it gives us a lot of hope and, you know, it has been quite emotional too (laughter).  And also, a bit of an identity shift, because I spoke earlier about how being undiagnosed had become quite a big part of our identity, and so now that's kind of shifting a little bit, that we have this new diagnosis, and are part of a new community.  Adam: You talked about it there, Rich, I mean, it's been really seen as a success story for the whole genomics ecosystem, especially the speed at which it all came together.  From the conversations I had with some of the individuals that were involved in the study, from the date of seeing the first findings in the lab meeting to a polished pre-print going live, was exactly 47 days, which in science terms is less than a second.  So that's how they positioned it to me, incredible.  And you've just said there, they set up this support group earlier this year, and already got 248 members, which is incredible.  The impact on families is significant, the mother touched upon it there.  I mean, for many parents there is that relief that it wasn't something they did during pregnancy, but instead, it is a chance occurrence.  For some, this knowledge means that they can make important decisions, choosing to grow their family, for example.  And it really ends that diagnostic odyssey that many families face, providing answers and potentially ending unnecessary testing that their child is going through.  But I think, and I can talk from personal experience here, that the largest impact is really being able to connect with other families and building that community, you cannot really understate that.  If I look at our own experience of getting a CRELD1 diagnosis for our children, the first time we didn't feel alone was when we could find that community.  We can support each other, we can learn from each other's experiences, and really also drive forward further research into that condition through advocacy.  So, I remember seeing that post on the Facebook page, about that RNU4-2 discovery, and this was before I'd even started in the role at Genomics England on the Panel, but you could really feel that excitement and the relief that they had.  And they mentioned that the official paper only had 36 other people worldwide, they found this little Facebook group that they created with five families in, and in the space of, what, 6, 7 months, they're already at 248.  That's all people that understand what they're going through.  And it's really hard to describe, it's like finding your family that you've never met, people that understand, and they really get what you're going through.  And being able to share tips, advice, learnings, and things that everyone's going through at different stages in their child's life.  So, I really don't think you can talk highly enough of that, that community aspect, and that's just been amazing to see.  And, look, this new era of research into the role of non-coding RNA genes, it really may open more opportunities for diagnoses for patients, participants potentially leading to hopefully more breakthroughs in the year ahead.  So now we're going to move on to why it's so important to engage patients and participants in the genomics world.  So, we'll now hear a clip from Helen White, who is the Vice-Chair for cancer on the Participant Panel.  Now Helen and I have been working really closely together as Vice-Chairs in this interim leadership role, to really ensure that we continue advancing the Panel's strategic initiatives while we recruit that new Chair.  So it's been amazing learning and working with Helen.  In this clip, she discussed an important topic that's been very much top of mind of the Panel, which is the importance of involving the patients and public in genomics research.  Helen: I think, you know, as patients, members of the public, we're eager to get on and for change to happen and things to be better, but it's, yes, a big, big process.  But also, good to hear that you talk about it being a collaborative approach, it's not just Genomics England, it's the NHS, it's members of the public and patient voices, it's other organisations working in partnership.  Adam: Now I think we all recognise the importance of engaging patients and public to ensure diverse communities understand the benefits of genomics, and actively involving patients and participants in the research, to make sure that they're including the perspective of what matters most to them.   Rich: I mean, it goes back to the thing that we really see as central to the value that we at Genomics England can provide.  So we increasingly think of ourselves as a data and evidence engine for national scale genomics, and I think a really important to call out there is that evidence is broad.  And part of that evidence is about public expectations, public preferences, and patient preferences.  And if you think about the big things that we do and where we bring that value, and bring that data and evidence engine role, is, you know, firstly in the digital infrastructure that we build and the data that we hold and present to our various users.  Secondly, it's in the evidence that we distil from that, and very much thinking about part of that being evidence in and around, including that piece on what people expect, this isn't just about hard science and health economics, this is an equally if not more important part of that.  And then thirdly, it is the third area of our focus is on that engagement piece, because that's so fundamental.  And I think you and Helen called that out absolutely right, about that being, that's integral to the whole process, and it's the beginning of any programme you need to start with understanding what the big drivers are, what the expectations are, and doing this very much together.  That's one of the reasons we're so fortunate to have the Participant Panel we do, in our Newborns Programme the Panel have been an important part of that design from the outset.  It's also about broader engagement with different communities, people who currently don't engage with genomics, because they've had no need to, sort of understanding that piece.  And I think we've definitely seen over time in health data research, but also research more broadly, where it's quite easy for these things to be disconnected.  And that results in two things.  It results in research happening about interesting esoteric stuff, but not on the stuff that makes a difference for families.  And I think that's really important, because researchers need to be directed in the resource limited world towards the things that really make a difference.  So that's the first thing.  And the second thing is, it's very easy, with the best will in the world, for people to make wrong judgements about what people are or aren't content with, and you need therefore to be absolutely transparent about what the research is.  Be really clear about what those questions are, and let people challenge you, right from the outset, so that we can design research studies, but also, the system as a whole, together in a way that everyone has a say.  Not everyone has the same view, but how we can develop a system that takes into account those things and gets that balance right.  This is about making a difference to people's health outcomes, thinking about how we achieve that, while also balancing off all of the different views there are, is really important.  And that's at the heart of it.  And it can be scary, because it's right that there is that challenge out there.  And it's one of the things that I think we've learnt at Genomics England, how important it is to be really open to that challenge, and to do that piece really early in all of our work, and have it there baked into our governance as well, for example, the Participant Panel.  Adam: Absolutely, and I think you've summarised all the key areas there really well, in terms of the importance of that engagement.  And one other area I'd just like to pick up on is the impact it can have on the patients or the participants, simply by having that connection with the researcher, that's doing all of the amazing stuff that for some of us, it's really hard to comprehend.  But having that interaction and collaboration with them, it's so important in terms of, again, I go back to giving you that hope.  And a real highlight for me at the Genomics England Research Summit was when Hannah, one of the members of our Panel, she came running over to us and she was just beaming.  And she said, “Guys, you'll never guess what, I've just met the scientist who discovered my daughter's diagnosis in the NGRL.”  And you could see that she was so excited, you cannot understate the impacts that can have on them as a family.  Like having that interaction and that personal connection with the person that really in some ways kind of changed their lives, in terms of understanding more about what that could mean for their daughter growing up, and how they're managing the condition.  So, it's amazing when you can see those highlights and hopefully we'll see more of those.  And it's also really important that we get that diversity I think, as well, in that collaborative approach, just to make sure that it is equitable for all.  And that really brings us on nicely to the next topic, which is about how do we bridge the gap between those diverse communities, and make sure that we're reaching everyone as best as possible?  So we're now going to hear a clip from Sandra Igwe.  Sandra is a CEO and founder of the Motherhood Group, speaking about the Generation Study.  Now, Sandra spoke about the importance of building trust, and how it is vital to engage with a diverse group of communities in the design of research studies.  Sandra: Every community's different, and every patient is different as well.  And so that may require different focuses or different formats or different messengers for different groups.  And so we like to have people with lived experience from the community representing that, and also driving the uptake of consent as well.  But failing to engage diverse voices can lead to perpetuating inequalities in access and uptake.  So it's really important to have representation, because the lack of it in research can overlook communities' specific concerns and needs.  Adam: So, Rich, did you want to talk about why it's so important to have that diversity?  Rich: Yes, I mean, it's critical.  One, I mentioned earlier, our vision as an organisation is a world where everyone benefits from genomic healthcare, and that word “everyone” really resonates.  I think Sandra has been really an important part of the work that we've done over the last couple of years, particularly through our Diverse Data programme.  But I think one of the real challenges for us is how we make sure that that is something which is embedded across all of our work.  And that's something that we're really focused on at the moment, how we embed the learnings that we've had through that standalone Diverse Data programme into everything we do.  Because we're absolutely committed to that, and I think that is engagement with the diversity of different groups relevant to each programme.  I think one of the real important things is that transparency piece about actually that it's hard to achieve equity in healthcare, full stop, because of historical underinvestment in some of these areas.  And I think being clear with people about that is a really important step, and then talking really practically about why it really makes sense to take different approaches.  And so one thing about our programmes and how we think about the future overall, if genomics is going to make a difference to more than half of healthcare encounters, it needs to be something that across all communities, and across the large majority of people in each of those, that this is something that they want to be part of.  Because it's going to make a difference for them or their families or something they really buy into.  And that's why this isn't just about thinking only about specific programmes where this is a question, it's about making sure that we're designing a system, developing the evidence that is really broadly applicable, and continues to learn.  Because we know that what we learn today is hopefully an improvement on where we are, but we continue to learn and learn and learn.  And it's about creating a system that does that, and does that equitably, or as equitably as we can.  Adam: So we're now going to hear from Moestak Hussein, who works to build and embed cohesion, inclusion, and social justice, in her role at Bristol City Council, in public health and communities.  Moestak talks about the value of co-production, and how this can help to build trust with communities who have historically been underserved or mistreated.  Moestak: If we talk about co-production, true co-production is really creating a power balance where there's no hierarchy, it's an empowering model.  It empowers both the researchers or the person that comes in, but also the communities that participate, and you all start on the same level, on the same outcomes and the same goals and aims that you want to achieve.  Adam: So, if I look at that from our perspective on the Panel, I think co-production in genomics research, so using participant data in the NGRL, is certainly what we'd like to see much more of.  To ensure that research is not only relevant to its intended audience, but also aligns with broader democratic principles of citizenship, accountability, and that transparency as well.  But look, we have to be realistic.  Some genomics research projects are not going to lend themselves to meaningful patient and public involvement in the early stages, but it's really important later on in the research pathway, if the findings identify a patient population who might benefit from that research.  At the moment, involvement of patients and participants, carers in research, is really not great, in terms of the researchers using the NGRL.  So, in conversations what we're hearing is they're saying, “Well, we don't know how to do it, we don't know what steps we should take.”  Or “We don't think it's relevant because we do this particular research.”    But really, our view is that some PPIE, or patient and public involvement engagement is better than none.  Some may not be relevant for all stages of the research pathway, we're not really seeing enough of that happening at the moment, and some papers are even being published without any context of the participants' lived experience at all.  Which can actually be quite frustrating, if you're that patient or parent, and you see a paper published, and you think, well, actually, why didn't they reach out to us?  Just to understand a bit about the symptoms that we're experiencing, what are the challenges that we're facing, just to really add that important context.  So, I think there's certainly an opportunity for us on the Panel, certainly for Genomics England, to be that kind of guiding light for those researchers.  Whether it's providing them with researchers, research papers, or a hub of patient advocacy organisations that are already connecting those patients with researchers.  It's all about signposting them the relevant information, so I think there's certainly things we can do there.  And it really fits in with the bigger engagement piece.  So, whether there's a landing page or a dedicated website that shows them, where do they go, what are the steps that they can take, what's the best practice, what's worked well for another researcher, and how did that lead to really great outcomes for the families involved?  That's where I think we can all play a part in guiding them on that journey, rather than it just being a case of, they're not doing that patient and participant engagement very well, and kind of criticising it.  Let's reach out to them and say, “Look, we can help you and guide you on that journey.”  Rich: I really agree with the need to make those connections happen.  One of the things I think that is often missing is just a confidence just to crack on and do some of this stuff.  And I think, actually, looking at the ReNu syndrome experience, that was work that was swiftly done.  Scientific at the beginning, the initial publication put out there so that people could understand, and was quite medical by necessity, in terms of the speed of getting information out there.  And then very quickly, and quite organically, patient support groups have formed, and also, the scientists are working with that group.  I had a really interesting conversation with Sarah Wynn, who's the CEO of the Unique last week, about how some of that has played out, how the role they've played in facilitating some of that.  And some of it just comes down to sort of really simple things, and working through how you can set up Zoom or whatever meeting, for people to learn about the condition.  And how you preserve anonymity, where that's appropriate, but also allow people to have discussions about their loved ones where they want to, etc.  So it's partly just about giving people the space and the confidence to get on with some of these things.  And as you say our, one of the things we at Genomics England are quite thoughtful about, and I think it's a really good topic to continue talking to the Panel about, is how we get that balance right.  Where, actually, us being a connector and, as you say, signposting useful resources or ways of doing these things, just to break down some of those barriers.  Because almost always the research groups, when they discover something new, this is really new territory for them, and they're often nervous about doing the wrong thing.  And so it's about breaking down some of that anxiety actually I think.  Adam: Yes, absolutely.  In our case, with our condition that we're advocating for our son, we've been working with a researcher.  And it's almost on us as well just to kind of share our story with them, and making them feel more comfortable to ask us questions and be very open and transparent about the more we can share, the more that can hopefully benefit their research moving forward.  It's very much a two-way thing as well, but I like what you said there about having the confidence just to kind of reach out and start those conversations, and have that starting point.  Next topic, we're going to look at some of the innovations that are on the horizon, that we're seeing in the world of genomics.  So, Rich, do you want to take us through what are the most exciting things that you're exploring at the moment?  I know we hear a lot about AI and the technological aspect, so why don't you take us through some of those?  Rich: Yes, so I guess this comes back to that question where we've been looking forward, you know, where might genomics be impactful and making a real difference to people's lives, to helping us have a more efficient healthcare system in the future?  And I think part of that is about this general shift.  You know, genomics technology, we just take for granted now how much it's shifted, how it's within the means of the healthcare system to generate genomic data.  And we're really fortunate in this country because of the digital infrastructure that we've been able to build together with the NHS, that opens up a lot of these questions.  And it's just extraordinary the time we're at in genomics, so almost take those two things for granted, which we should never do.  The change in genomic testing technology, which continues to advance, and secondly, thinking about the digital infrastructure, like the nuts and bolts of what we've got, and the ability to safely store and reuse and analyse some of that data at scale.  And point at two big things.  Firstly, genomics enabled therapies are changing a lot.  So, our understanding, our ability to make a diagnosis, or understand what's different about a cancer, for example, mean that in various ways it's becoming feasible to do more tailored therapies.  Where knowing that, the genomics nitty-gritty of that condition, helps you tailor that, or create sometimes even a bespoke personalised, truly for that one individual, therapy.  And in rare conditions we see that with the so-called N=1 therapies, but also with gene therapies and so forth.  And in cancer we see that with the cancer vaccines, for example.  So that's an enormous area of change, and one of our responsibilities is to support that sort of research, to help identify people who might be eligible for trials or treatments.  But it's also to work with the ecosystem to think about how we can help support the generation of evidence that means that those therapies can be affordable and so forth, on a scalable basis.  So that's one really big area of excitement.  And we see our Rare Therapies Launch Pad being part of that, the National Cancer Vaccine Launch Pad, being part of that.  So that's thing one.  Thing two is AI and machine learning, and I think sat on alongside the sort of broader picture of saying, there's a lot left to learn, there's enormous potential in genomics in terms of playing a role in many different situations, not just in rare conditions, in cancer.  And we know doing that well, but also scaling it, making it really efficient, so that we can do that in a context of a really busy health service, one of the answers is making sure that we're leveraging everything we can about the potential of AI.  And there's lots of different ways in which that can be supportive, I won't list lots of them.  But one of the things that we're doing at Genomics England and working with the NHS is thinking about the most promising areas.  And some of those are quite, like, down and dirty, if you like, so sort of saying, which jobs are there that we can use AI, if you like, as a co-pilot, alongside experienced scientists, to speed up their work?  And we're really excited about the role we can play in a few ways actually.  So the first one, back to that sort of data and evidence engine point, is helping organisations who have a tool, help validate it for use in the NHS, and say, “Does it perform to this standard?  What do we want to say about how it performs from an equity point of view?  And from a clinical safety point of view?” etc.  And making that leap from stuff that makes a Nature paper to stuff that lands in clinic is surprisingly challenging, and that's one of our roles.  And we really enjoyed working with various companies and academics over the last few years on that.  We did some work recently with Google DeepMind, on their AlphaMissense tool, thinking about how we can think about that role that might play, for example, in speeding up the interpretation of rare variants that might cause rare conditions.  And there's enormous potential in all sorts of different parts of the sort of end to end of genomics playing a role in healthcare.  And then I'd also say one of the really important things is because genomics in many ways just needs to be part of healthcare and not be treated differently, we also need to recognise where there are questions we need to work through really thoroughly that are a bit more bespoke.  And one of the things that we're really committed to doing, as we look to the future, is making sure that we can support on some of those questions that we really need to be clear on.  I'll go back to that point on, what do we mean about making sure we understand how a tool is working, and whether it's producing results in an equitable way for all different communities?  How do we understand that?  How do we explain what we understand about the performance of a tool?  How do we make sure that patient identifiable data remains non-identifiable if a tool's been built, trained on data?  Working through some of those questions.  But they're really important for us to do, and we're enormously excited about the potential, and we're really committed to working through in detail how we can make that path to adoption safely and in the way that everyone would expect and desire as rapid as possible.  We're just one step in that process.  But we really see a sort of important role for helping people who are producing various tools or various use cases, helping them prove them, helping them validate them, and making the system more efficient overall, but in ways that we really understand.  Adam: That's fantastic.  Look, not that I'm biased at all, but I can tell you that the AlphaMissense innovations that are being developed are shared a lot internally at Google, it has been seen as an amazing success case.  So hopefully we'll see more on that moving forward.  But in the next clip, we're going to hear from Francisco.  So Francisco is the Director of Bioinformatics at Genomics England, who tells us more about the application of AI and its benefits in genomics in healthcare.  Francisco: So AI is already driving the development of personalised medicine for both research and healthcare purposes.  Now at Genomics England we are investigating the use of AI to support a number of tasks, for the potential impact in both research and healthcare.  In the context of healthcare, we are talking about AI tools that can support the prioritisation, the ranking of genomic variants to allow clinicians to make more accurate and faster diagnosis.  Adam: While all of these innovations sound really exciting, it's really important that we just continue to bring that patient and participant community on that journey, just to ensure that they really understand the full benefits, and we talked about that on the episode today.  I know that the panel has always encouraged Genomics England team to look at its boots while shooting for the moon.  I really like that phrase, just to make sure, look, we can't forget where we've come from to make sure we're taking people on that journey.  So, we're going to wrap up there.  Thank you to Rich Scott for joining me today, as we reflected on key milestones for 2024, and looked at the year ahead for both Genomics England and the wider genomic ecosystem.  If you enjoyed today's episode, we'd love your support.  Please like, share and rate us on wherever you listen to your podcasts.  I've been your host, Adam Clatworthy, this podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.  Thank you everyone for listening. 

Queen - A Kind Of Magic Michael Jackson - Pretty Young Thing BluePop - Never Look Back Bronski Beat Feat. Perfume Genius & The Knocks - Smalltown Boy New Order - Blue Monday Blur - Song 2 Ugly Kid Joe - Everything About You Bon Jovi - Livin' On A Prayer Smash Mouth - Walkin' On The Sun AC/DC - You Shook Me All Night Long Alien Ant Farm - Smooth Criminal David Bowie - Blue Jean Myles Smith - Stargazing Everything But The Girl - Missing (Todd Terry Club Mix) Tom Odell - Another Love (Zwette Remix) Fun Boy Three - Our Lips Are Sealed The La's - There She Goes

The original Sixpence None the Richer lineup came together for the first time in over two decades to release a new EP, Rosemary Hill, and put on the band's first tour in over ten years. Leigh Nash and Matt Slocum joined Billboard's Behind the Setlist to talk about getting the band back together, recording Rosemary Hill, the ending popularity of the band's hit song "Kiss Me," the interpolation of "Kiss Me" in Lisa's "Moonlit Floor," the band's cover of The La's "There She Goes," the time Lee Mavers of The La's showed up to the band's concert in London in 2015, and much more. Links: Sixpence None the Richer home page Sixpence None the Richer tour dates Jay Gilbert @ Label Logic Glenn Peoples @ Billboard Learn more about your ad choices. Visit megaphone.fm/adchoices

Jason Fraley interviews Sixpence None the Richer guitarist Matt Slocum as the band is ready to rock The Birchmere in Alexandria, Virginia on Nov. 3. They preview the show and reflect on the band's biggest ‘90s hits from the iconic “Kiss Me” to their cover of The La's “There She Goes.” (Theme Music: Scott Buckley's "Clarion") Learn more about your ad choices. Visit podcastchoices.com/adchoices

Jason Fraley interviews Sixpence None the Richer guitarist Matt Slocum as the band is ready to rock The Birchmere in Alexandria, Virginia on Nov. 3. They preview the show and reflect on the band's biggest ‘90s hits from the iconic “Kiss Me” to their cover of The La's “There She Goes.” (Theme Music: Scott Buckley's "Clarion") Learn more about your ad choices. Visit podcastchoices.com/adchoices

Today's Song of the Day is “There She Goes” from The Cactus Blossoms' album Every Time I Think About You, out August 30.The Cactus Blossoms will be performing at the Fitzgerald Theater on Friday, September 13.

What's your most loved and least favorite song on the La's self-titled debut album?! Jim follows up our 1990 Matthew Sweet episode with....a 1990 classic from his beloved Liverpool. A ton of fun talking about our favorite one album wonders. One pandemic day, Adam's roommate Mike Dalke confessed that he tour managed Straightjacket Fits on the La's lone US tour in 1991. Makes him a perfect expert witness/guest ranker along with 91X's Mike Halloran who does our first guest closing credits in a very long while. Listen at WeWillRankYouPod.com, Apple, Spotify and your favorite Liverpudlian sweet shoppe. Follow us and weigh in with your favorites on Facebook, Instagram & Threads and Twitter @wewillrankyoupod . SPOILERS/FILE UNDER:The Beatles, Cast, Elvis Costello, Mike Dalke, Doledrum, Dolgernon, England, Everton, eyeball, Failure, Feelin', Freedom Song, Mike Halloran, Herman's Hermits, I Can't Sleep, I Feel Fine, I.O.U., jangle pop, the Kinks, the La's, Liberty Ship, Steve Lillywhite, Liverpool, Looking Glass, Lee Mavers, Neil Mavers, Oasis, John Power, Redd Kross, Rolling Stones, self-titled debut album, skiffle, So I Married An Axe Murderer, Son of a Gun, Straightjacket Fits, Barry Sutton, There She Goes, there she goes again, Timeless Melody, Eddie Vedder, Way Out, we hate our own record, Wibling Rivalry, 1990. US: http://www.WeWillRankYouPod.com wewillrankyoupod@gmail.comhttp://www.facebook.com/WeWillRankYouPodhttp://www.instagram.com/WeWillRankYouPodhttps://www.threads.net/@WeWillRankYouPodhttp://www.twitter.com/WeWillRankYouPo http://www.YourOlderBrother.com(Sam's music page) http://www.YerDoinGreat.com (Adam's music page)https://open.spotify.com/user/dancecarbuzz (Dan's playlists)

Leigh Nash and Matt Slocum of Sixpence None the Richer join Caroline Hobby for this episode of Get Real. Leigh and Matt share about being ‘two kids from New Braunfels, Texas' that went on to find massive success with iconic hits like “Kiss Me” and “There She Goes.” Leigh, lead singer of the group, grew up wanting to be the next (fellow Texan) Tanya Tucker. Leigh and Matt described not being ‘cool' enough to break into the Austin music scene, but they were accepted in the Dallas scene. Matt would get out of college classes and drive himself and Leigh, who was still in high school, up to Dallas to perform and that's how they got their start. The two detail their love / hate relationship with “Kiss Me” which was a massive hit early in their career, prompted by tv/movie placements like “She's All That” and “Dawson's Creek.” They discuss getting a massive break with David Letterman having them on his show to perform and then pulling them in for an unplanned interview. Leigh and Matt share about the pressures of fame and success and going through a season of burn out and more. Follow Get Real on IG: @GetRealCarolineHobby Follow Caroline Hobby on IG: @CaroHobby  Follow Sixpence None the Richer / Leigh Nash on IG: @leighbirdnash Have a question for Caroline?? You can leave a voice message and she may answer on a future episode! Click hereSee omnystudio.com/listener for privacy information.

Joey was diagnosed with DYRK1A syndrome at the age of 13, through the 100,000 Genomes Project. DYRK1A syndrome is a rare chromosomal disorder, caused by changes in the DYRK1A gene which causes a degree of developmental delay or learning difficulty. In today's episode, Naimah Callachand, Head of Product Engagement and Growth at Genomics England, speaks to Joey's parents, Shaun Pye and Sarah Crawford, and Sarah Wynn, CEO of Unique, as they discuss Joey's story and how her diagnosis enabled them to connect with other parents of children with similar conditions through the charity Unique. Shaun and Sarah also discuss their role in writing the BBC television comedy drama series 'There She Goes' and how this has helped to shine a light on the rare condition community. Unique provides support, information and networking to families affected by rare chromosome and gene disorders. For more information and support please visit the website. You can read more about Joey's story on our website.   "Although we're a group supporting families and patients, actually a big part of what we're doing is around translating those complicated genetics terms, and trying to explain them to families, so they can understand the testing they've been offered, the results of testing, and really what the benefits and limitations of testing are...just knowing why it's happened, being able to connect with others, being able to meet others, but actually often it doesn't necessarily change treatment."   You can read the transcript below or download it here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Shining-a-light-on-rare-conditions.docx   Naimah: Welcome to the G Word. [Music] Sarah Crawford: But I would also say it's okay to grieve the child that you didn't have that you thought you were going to have. I just think that's so important. And I think for me, the most difficult thing in the early couple of years was feeling like I couldn't do that because nobody appreciated that I'd actually lost anything. [Music] Naimah: My name is Naimah Callachand and I'm head of product engagement and growth at Genomics England. On today's episode, I'm joined by Shaun Pye and Sarah Crawford, who are parents of Joey, who was diagnosed with DYRK1A syndrome at the age of 13, and Sarah Wynn, CEO of Unique, a charity which provides support, information and networking to families affected by rare chromosome and gene disorders. Today, Shaun and Sarah are going to share Joey's story, and discuss how their role in writing the BBC comedy drama There She Goes has helped to raise awareness of people with rare conditions in mainstream culture. If you enjoy today's episode, we'd love your support. Please like, share and rate us on wherever you listen to your podcasts. So first of all, Shaun and Sarah, I wonder if you could tell us a bit about Joey and what she's like. Shaun Pye: Yes. So, the medical stuff is that she's got DYRK1A syndrome, which was diagnosed a few years ago, which means that she's extremely learning disabled, nonverbal. Sarah Crawford: Yeah, autistic traits. Shaun Pye: Eating disorder, very challenging behaviour. She can be quite violent. She can be quite unpredictable. Doubly incontinent, let's throw that in. She's 17 but she obviously has a sort of childlike persona, I would say, you know. She sort of likes things that toddlers like, like toys and that sort of thing. But that's the medical thing. What's she like, she's a vast mixture of different things. She can be infuriating, she can be obsessive, but she can be adorable. Occasionally, she can be very loving, especially to her mum. Sarah Crawford: She's very strong willed, you know. Once she knows she wants something, it's impossible to shift her, isn't it? So, she's got a lot of self-determination [laughter]. Shaun Pye: So, her obsession at the minute, or it's fading slightly, which is quite funny, is that she's become obsessed by – there's a toy called a Whoozit that she loves, but she became obsessed by the idea of – she was typing buggy baby Whoozit into her iPad, so that's how she communicates. She's got quite good literacy skills. Sarah Crawford: Yeah. Shaun Pye: And we figured out eventually that what she wanted was she wanted her mum to take her to the park to find a buggy with a baby in it that also had a Whoozit in it that she could steal, and when Sarah explained to her at some length that it was not yours, she would say, “It's not yours,” that drove her insane with excitement, at the idea that she could steal another child's toy. So, it's a good example of her because it's funny, and, you know, it is funny, and she's so cheeky about it and she flaps her hands, she's very hand flappy, and she sort of giggles and she gets really excited, but, you know, the 2,000 time she asked to do that, and we have to walk to Mortlake Green near our house, and to the point where – again, it's funny when it happens, but you get to the green and she doesn't even look for the buggies anymore. So, that's an example. But she's a lot of different things, you know, and I suppose the thing that is dawning on us at the minute is that she's 17, she's going to be 18 very soon, and, you know, the list of presents that she gets on her birthday is always the same, ‘cos she's autistic. So, at Christmas, she always gets the same presents. But the idea that, for her 18th birthday, we're going to have to buy her children's toys and – you know – Sarah Crawford: Toddlers' toys. Shaun Pye: Toddlers' toys and everything, it's sort of hitting home, but that's something – a bridge we're going to cross on July 27th [laughter]. Naimah: Yeah, I can imagine that's quite a difficult bridge to cross, but it sounds like, you know, Joey's got lots of personality and you have lots of, you know, lovely times with her as well. I wanted to go back a bit before the diagnosis. So, you mentioned Joey's been diagnosed with DYRK1A syndrome, but can you tell me what it was like before you both – and a bit about your journey, and when you suspected maybe something might be wrong and what you did first of all. Sarah Crawford: I mean, there were hints that things might be wrong before she was born. The measurements were such that they thought there might be intrauterine growth restriction, because basically my belly wasn't as big as it should be for dates, and that was obviously the working hypothesis. And they actually did a scan, an ultrasound quite late on in the pregnancy, which I picked up when I looked at the report was showing a small head measurement. And I remember querying it with the consultant, who said it was probably measurement artefact and nothing to worry about. But after she was born, she wouldn't latch on, you know. We had to switch to bottle feeding straight away. She was small, and the head measurement actually was small. You know, you could see on the very early one, they must have taken it kind of three times to try and get it bigger, probably angling the tape measure, and it had been crossed out and rewritten. That was the pattern. So, her head simply did not grow in those early days in the way that you would expect. So, I was wildly anxious about this right from the get-go, and very adamant very early on that I thought that, you know, she was learning disabled. And to be fair, you know, the GP took that seriously. You know, at the six-week check-up, things weren't quite how they should be. We got in the system very early on, saw a paediatrician really quite early. So, I was, you know, fairly convinced very early. I mean, I'm a clinical psychologist, I've got training in learning disability, a bit more clued into these sorts of things I guess than the general public on the whole, and I think the bigger challenge for us wasn't so much the attitude of, you know, the healthcare system. It was more trying to debate this with family, who were very much of the, “There's nothing wrong with her,” kind of mantra. Shaun Pye: She wasn't our first child, so we had experience – and all children are different, but because we had that comparison – all children are different. Obviously, there's not a set thing. But we had a benchmark in our own minds and hearts sort of, to know that she was missing things that he'd hit, and something wasn't right. And the parental thing – basically, we're talking about grandparents – it was sort of – there were two approaches that they took, one of which was to tell us nothing was wrong, because they couldn't bear the idea that me and Sarah were in pain or unhappy. It was just out of pure love. It's just a natural human reaction to say, “I'm sure everything's going to be alright.” They were just trying to be supportive because that's, you know, what they thought they should say. And then the other approach from other members of the family was again from just a supportive, loving aspect, but it was a sort of, “They just need a bit of tough love, pull your socks up. Lots of children are different and you just need to learn ways of dealing with it.” And the way I describe it nowadays is that they'd mistaken Joey for someone on the far end of a spectrum of abilities or behaviours, whereas she wasn't really on that spectrum at all. She was on a different spectrum [laughter]. She wasn't a difficult child. She wasn't a naughty child, was she? Sarah Crawford: No, no, she was a child whose brain hadn't developed. Shaun Pye: She was a very, very different child. So, all of that has gone on over the years. And genetics wise, we had early genetics testing. Kingston Hospital took quite a lot of interest early on, and then they sort of didn't take any interest [laughter]. Sarah Crawford: No, it's more that they ran out of technology, so they couldn't pinpoint the diagnosis with the technology they had. I mean, the geneticist was excellent, wasn't he? We really loved him. Shaun Pye: Yeah, Sarah's going to like this, ‘cos I'm about to say I love geneticists ‘cos they're – on the spectrum of doctors, I love them, ‘cos one of the guys we saw just looked at it like a puzzle and he was sort of excited to solve it, and he really wanted to work out – and in a way, you could have walked away from that thinking, “We wanted the bedside manner and we wanted the, “Oh, that's terrible,”” whereas he really was just a sort of – he was terribly excited about the whole thing, and he wanted to solve a Sudoku, basically, yeah. But me and Sarah walked away from that just thrilled, ‘cos we're the same [laughter]. There's not a Sudoku or a crossword that we don't love finishing. So, we walked away thinking, “These are exactly the people we want involved.” And so when I say they gave up, that's not fair. They just ran out of – you know, they can't spend increasing amounts of NHS money. So, they tried – you know, different genes were mentioned. Sarah Crawford: Yeah, they tested for a whole load. I mean, his attitude was right from the get-go, you know, based on the history, everything else that had been ruled out, dysmorphic features, those kinds of things – I don't know if that's the terminology they would use now – but that this was going to be a chromosomal disorder, and that they would do the tests that were available, but that it was possible that those wouldn't pinpoint in, but that the technology was changing all the time, and that if they didn't find it now, they would in the future. And that was how it played out. Shaun Pye: There was one meeting that I did get a little bit – having said that, I got slightly – but you didn't – about one of the geneticists, who sat there and said, “We'll do this test and this test, and if they come back with any interesting things then we can get really excited.” And he used the word excited, and I was sort of a bit, “I'm not that excited by all of this.” But actually I calmed down quite quickly, and in hindsight I really wanted someone to get excited by the idea of working out – but then a long time went past. I wouldn't say that we lost interest in finding out what her genetic condition was, we didn't. It's just it's something that became less and less – it wasn't like a holy grail for us. But then the opportunity came along with 100,000 Genomes, and we signed up immediately, and then they did that and it was a few years before that went through the system. And then out of the blue really, we were asked to go and see a geneticist, and we had no idea that this is what it was. I honestly thought it was just a routine sort of, “We've got a few more theories,” or something, and she just said, “We've found out what it is.” And that moment is – well, we tried to describe it in the TV programme, but it's quite hard to describe what goes through your mind when, after 13 and a half years, somebody suddenly says, “Oh, by the way, that thing that happened with your daughter, we've worked out what it is.” [Music] Naimah: I wonder if you could talk a bit about what the diagnosis meant for you both. Shaun Pye: It was sort of different for both of us, wasn't it? I was a bit more excited, Sarah was a bit more… Sarah Crawford: My attitude early on was that, while the label would be nice to have, it wouldn't make any material difference to anything to do – I mean, it was never going to be precise enough that it would give a map out of what we'd expect for her as an individual, and it wasn't going to change the fact that there was a severe learning disability. It wasn't going to change the challenges that we would have over things like schooling, therapies, you know, what the future holds for her. It is useful to have it, but it doesn't really change the day to day. Shaun Pye: But what it did change, and this is where Unique is so brilliant and important, is that it puts you in touch with people who have children with a similar condition. That's the main takeaway from getting the diagnosis. ‘Cos Unique is great, and obviously in a broad sense it's great, but to actually meet people and be in touch with people whose children have DRYK1A – so, I've met quite a lot of them now and I've met quite a few of the children. There was a meetup last year, and you just walk in and you just go, “Oh my god, oh my god” [laughter]. Literally girls running around, just the same as Joey, just the same, and the different ages as well. So, there were some in their twenties and there were some just starting out on their – who'd only, you know, very young, been diagnosed. But just to see your life just in front of you [laughter] is very useful. So, that's the basic takeaway, I would say, from the diagnosis. Naimah: Yeah. It must have been really nice to be connected with those other parents and to kind of share experiences as well. Shaun Pye: It was, it was. And this applies to most – well, every family from Unique that I've ever encountered actually. Nearly all of the DYRK1A – ‘cos it's spread around the world as well, so, you know, there's slight cultural differences, but just to see that they are all of a very similar mindset is comforting, ‘cos it sort of makes you think, “Actually, we haven't been doing this wrong.” It's a sense of humour thing. It's an attitude to the world. It's the way they see their children. It's the way they see the outside world. I'm not saying we're all uniform, of course we're not, but you can see it. When you talk to them, you can just see that they have the same sensibilities as you about the whole thing, and it's sort of quite reassuring really that, you know, we're not outliers. Naimah: I just wanted to go back to, you know, when you were talking about the bit before the diagnosis, and I wanted to come to you, Sarah, to ask, you know, Shaun and Sarah both described their journey with a lot of uncertainty, but I wondered, could you tell me a bit more about the role Unique plays in this part of the journey for parents? Sarah Wynn: Yes. Well, actually I think Shaun's done such a good job of summing up why Unique exists already, thank you, Shaun. But I think really what we're aiming to do is to try to alleviate that sense of helplessness and being overwhelmed, and isolation that often families feel when they have a child that's got additional needs. I think our experience with our Unique community is very similar to that that Shaun and Sarah have described. So, many parents know that there is something – that their child isn't developing as they would expect. And we hear lots and lots of stories of families going to healthcare professionals and actually not being taken seriously, or like Shaun and Sarah were saying, you know, everybody saying, “No, they're just a bit delayed, it will all be fine.” And so I think that's a common experience of many families, that the parents inherently understand and know their child better than everyone else, and it's very common that families have to wait quite a long time to get to that point where they get to a diagnosis. And often I think the uncertainty continues after you get that diagnosis, because as Shaun and Sarah said, you get a diagnosis of a rare condition and actually there just isn't that much information available. So at Unique, we try to help in various ways. One is by connecting families with other families, and that might be other families who've got the same condition, but it might also be families who are just going through the same experiences as you are, so you've got someone to share your journey with. And the other thing we try to do is to help families understand the kinds of genetic testing they've been offered, and a bit about the results of genetic testing. Because of course genetics is something that lots of people haven't thought about since school, and actually quite often hoped they never had to think about again. Although we're a group supporting families and patients, actually a big part of what we're doing is around translating those complicated genetics terms, and trying to explain them to families, so they can understand the testing they've been offered, the results of testing, and really what the benefits and limitations of testing are. Sarah said, often you get a result and a diagnosis from genetic testing, but that doesn't give you a magic treatment that's going to cure your child. It's really important, for all the reasons Shaun and Sarah have already said, just knowing why it's happened, being able to connect with others, being able to meet others, but actually often it doesn't necessarily change treatment. Shaun Pye: I guess one thing I would say, just ‘cos it was important to us, and it's de novo in our case, but that's comforting to know. We always suspected it was and we were always told it was, but to have that confirmed means – I mean, we're not going to have anymore children, but it's more to do with our son and whether there's something inherent that could be passed on. Sarah Wynn: Yeah, it gives you information that you can use for either your own family planning or other family members. Naimah: You mentioned that Joey received her diagnosis via the 100,000 Genomes Project. How did that come about? Sarah Crawford: I think it was offered, as in the 100,000 Genomes Project was the only way that that was potentially available at the time, that this was effectively a project that was going on to try to answer those unanswerable questions with the technology they had at the time. I mean, it was years between us enrolling in it and getting the answer. Shaun Pye: It's so important to me in hindsight the diagnosis, just for all the reasons that we've been discussing, but without doing down the role of genetics, there was a period of Joey's life when we thought we'd run out of road with the testing, and it wasn't something that really I was obsessed with or occupied my mind massively. It wasn't like me and Sarah were saying, “We must get back to Kingston Hospital. We must get back to the geneticists. We must write to the NHS. We must insist that they do this.” We'd sort of resigned ourselves to the fact that they'd done all that they could and they hadn't found it, and that's what it was going to be. Having said that, when 100,000 came along, we obviously jumped at the chance. We had no misgivings about it whatsoever, ‘cos I think we'd resigned ourselves to the fact that we might never know. Sarah Crawford: I think I thought that at some point we would, because the technology, the methodology that they're using obviously was changing all the time, but it didn't preoccupy me because I didn't think it would make a massive amount of difference. It probably made a bit more difference than I thought it would, for the reasons that Shaun and Sarah have said, about, you know, particularly the sort of connecting with others, you know, just realising how useful it is to be able to hear about the similarities and differences that other families experience. Shaun Pye: I think a key point for us, and I'm sure this is true for the vast majority of Unique families, that we never thought that there was a cure. We never ever, ever, ever, ever, ever thought there was. And nobody in our family did. It's not like anyone was saying, “Oh, with this treatment or that treatment…” Once you know that it's DYRK1A, there's obviously things that you can tailor towards her in terms of therapy, you know, there are things that you can do, but we were never under the illusion that if we found out what it was, she could go on and some sort of drug would suddenly make it better. Sarah Crawford: Yeah, we're not queuing up for experimental stem cell treatment [laughter] in weird and wonderful parts of the world, you know. What's happened has happened. Her brain didn't develop properly in utero and beyond. There is no changing that. Naimah: But I guess with diagnosis, and like you said, if you can get some relief from some of those other symptoms that are caused by it, then, you know, that's some sort of relief for Joey and a bit of help. Shaun Pye: Yeah, there are absolutely concrete things that you can learn that will – Joey will never be better, but talking to the other families – eating disorder, that's one of them. Constipation, that's another thing. But hearing their experiences, hearing the roads they've gone down, finding out that there's, you know, a unit somewhere in the country that specialises in this, that or the other, these are concrete things. It's not just about emotional support. It's absolutely about practical support. But there's no magic wand, but there are things that, you know, we've learnt that can help. Naimah: And then Sarah, to come to you then, do you find that families find it difficult to seek out help from Unique once they've received a diagnosis, or are they likely to come quite quickly to you? What's your experience? Sarah Wynn: It's a really good question, and of course we don't know the ones that never find their way to us. But what we try to do at Unique is to be sort of warm and friendly and welcoming, so that it's not too daunting. ‘Cos I think all of these things are an extra thing for parents who are already busy and dealing with lots of medical appointments and therapies, so we try to make it as easy as possible to join us. Many, many families do join us at that point of diagnosis, because that's when they're looking for more information. Actually, you can get in touch with Unique and if you decided you didn't want to join us, that's also fine. So, we have a helpline that you can call. And for some people, joining a support group just isn't their cup of tea, and that's really fine. Other people find us a little bit later on, you know, perhaps when their child starts school or, you know, there's sorts of crunch points where people are looking for extra information or support that they tend to find their way to us. But one of the things we try really hard to do is to get the word out that organisations like ours exist, so that we can be contacted if people want to. And lots of our families come, like Shaun and Sarah, after the geneticist has told them that we're there. So, that's a really important thing for us is that everybody knows we're there. You can join us and involve yourself as much or as little as you want. So, as we've already talked about, one of the things we do is put families in touch with each other, but not all families want that. So, you know, you can join and remain no contact, and stay quietly under the radar if you'd like to. But those people often want their child to be sort of counted in the system, you know. When you say how x number of people have DYRK1A, they want their child to be in that number even if they don't want to go to the meetups, or they're not quite ready to do that. And of course people change. So, some people join us and think, “We're just going to quietly sit here for a bit,” and then change their mind a bit further down the line. I think, although There She Goes, and what Sarah and Shaun have said about their journey is really similar to many people's journeys, of course everyone is a bit different, and so people want different things at different times. And what we try to do at Unique is to be those things for whenever families need us. Naimah: Yeah, that must be really reassuring for families, knowing that they can come to you whenever they feel ready to more than anything. Shaun Pye: Just to jump in quickly as a sort of user of Unique, from the sort of different perspective from Sarah, that is literally how the service presents. That's not an ideal that they aspire to. That's what it's like. So, I can confirm that – I mean, people think different things, and within our DYRK1A group, for example, you know, there's a broad range of people who think various things, but the one thing about it and Unique is it's very well self-policed, so people know how to behave. You won't be subjected to ill informed sort of medical nonsense. It's very well self-policed, but it's also very, very occasionally – I'm speaking for the DYRK1A group – the example they gave me was around covid and vaccinations, and, you know, people have very strong views about it, and these forums aren't the places to be having that sort of discussion. Sarah Wynn: I think that's exactly it. One of the ways families can connect with each other is via an online forum, and generally we take quite a light touch in moderating it, because the forum is for the families, and we want them to feel ownership and that it's their safe space. But yeah, ever so occasionally, it needs just a tiny little bit of input. But yeah, I think Shaun's right, everybody's there for the same reason, and that's to kind of share experiences, sometimes vent about the world, ask questions, and actually celebrate things that other people might not see as such a celebration. You know, lots of our families, their children might be late to walk, and it's a place where you can celebrate all of those sorts of things as well. [Music] Naimah: So, next I want to move on to talk about 'There She Goes'. So, you mentioned it briefly there, Sarah. So, this is the BBC Two comedy drama, for which Shaun and Sarah were both writers on, and it really draws upon your real-life experiences of caring for Joey. And although the series is posed as a gentle comedy, it also displays really frank and honest emotions experienced by Emily and Simon, who are the parents of Rosie in the programme. Let's listen to the poignant clip from the series by Jessica Hynes, who plays the mother, Emily. Emily: You know, when you're younger and daydream about what family you might have – so, I was the girl who thought Claire always got away with murder. Or when we found out Ben was going to be a boy, if it would be like you and Soph, you know, dorky older brother, biffy outdoor sister who everyone liked, you know. But in none of my dreams was there a girl who… Yeah, who was like Rosie. Yeah… No one ever dreams of a child like Rosie… You know, and I… I love Rosie, but why do I have to be defined by her? You know, for a long time, I felt cheated by her, because she wasn't the girl that I dreamt about, you know. She'd taken her place. And then as she got older and I accepted her more, you know, what if it wasn't that she'd taken her place, what if she just pushed in the queue and then if we started again, then if I had, you know, a normal girl, and then I wouldn't have to… I wouldn't have to resent Rosie anymore because I'd have the family that I'd always wanted, and I'd have – I'd have Rosie as well, yeah. [Sobbing] Just after all these years, haven't I earnt that? [Music] Naimah: Off the back of that, I wondered if you could both tell me a bit more about what it meant for you being able to write for the programme and, you know, what it's meant in the aftermath as well. Shaun Pye: So, it came about - I basically am a TV writer and Sarah's a psychologist, but it came about primarily because I was trying to think of something to write about and we realised that Joey's just an incredible character. Those sort of children aren't featured on mainstream television really at all, I would say. And so we thought it would be an interesting thing to do. But from that sort of slightly selfish motive, I wrote an episode, and Sarah read it and said, “You're not doing that, it's not honest enough” [laughter]. So, Sarah came on board as a writer with me and we cowrote it. The whole thing's cowritten. And it's the most important piece of work I've ever done, I ever will do, and it became far more than just a TV programme. The first series went out and we had a screening, and Unique came to the screening, along with some of the other charities, and we were so terrified of what the response would be. And the fact that the response was what it was, which was overwhelmingly, “It's like looking at our own lives on television,” it was recognition. It was nothing to do with whether the stupid jokes were funny or anything [laughter]. It was purely whether – if anyone had turned round and said, “This has got nothing to do with what it's like bringing up our child,” or our brother or sister or whatever, that would have been quite bad for us, but it wasn't, and that's been the overwhelming response since. It's, “Thank you for putting our life on television, ‘cos it's not normally on television.” So, it became that, and so the second series was even more about that, and then the special that we did was almost totally aimed at, we need to tell these stories because there are so many people in this country who this story isn't being told for them. And it so happened that Joey hit puberty and had some very, very, very problematic behaviours, sort of self-harming behaviours, it happened quite close to her being diagnosed, so we thought this story is just written for us. Joey's written it for us. So, we just sort of wrote down what happened. That was sort of what it was. And then obviously the response to that was very good. So yeah, and we wanted to feature Unique ‘cos that was such an important part of what we'd been through. So yeah, it went from me wanting to further my career to that having nothing to do with it, and me wanting to [laughter] tell the story of children with rare chromosomal disorders and learning disability, and that's what it became. Naimah: I'm sure it must have been almost quite cathartic, I imagine, in a way, to share your story that way, and also, you know, give you a real sense of accomplishment to be able to kind of share your story on that platform. Like you said, like it's never been done before in such a way, and to get that kind of response from other families, it must have really just helped you both in your journey as well, I can imagine. Shaun Pye: For me, because it's what I do for a living, it still retained a certain sense of my job. And, you know, emotionally, obviously, entirely committed to it. All the bits that make you sort of cry, or all the bits that are like, oh my god, Sarah wrote – I wrote all the stupid bits that David Tennant says [laughter]. So, I think it was more cathartic for you. You really had to dig deep into some quite unpleasant memories [laughter]. Sarah Crawford: Yeah, it wasn't always the most comfortable process, you know. We'd sort of agree – I mean, particularly in the earlier process, we'd sort of have a little think about what we wanted to talk about, and then I'd go off and like kind of delve deep into memory, and just type a stream of consciousness, and I'd be sitting there sobbing [laughter], you know, with tears rolling down my face, you know, just reliving these really awful experiences. But yeah, I think the end process ended up being cathartic, and a lot of that was stuff that I would never have imagined sharing with anybody [laughter], let alone, you know, this huge audience of people, which – yeah, strange how things evolve. Shaun Pye: Yeah, I think possibly if we hadn't done this then we might have just tried to not think about these things and not bring them back, and I think we probably wouldn't have spoken to each other – we may have, I don't know. I don't know what would have happened. But I don't think these things would have come out into the open. And very interestingly, another side aspect of it in the catharsis way is the effect the programme had on the wider family. There were certain members of the family who were really shaken by that programme, really shaken, because they had a set view. Even as Joey got older, they had a set view of the history and what had happened, and they were really shaken by the idea that their – out of love again, there's nothing bad here, but they were really shaken by the idea that their actions had a detrimental effect on us when Joey was born. You know, there were people saying, “Well, I didn't say that there was nothing wrong with her,” and, “I didn't say this or that,” but actually when you see it presented in the programme then there was a lot of re-evaluation that went on, in a good way, in a positive way and it's all good. Sarah Crawford: I think there's something about seeing it, you know, and especially given, you know, we were so fortunate with the cast because they're so good at portraying it. And I think there's a power in seeing things played out rather than just hearing about them in the abstract. Naimah: Yeah, definitely. I definitely had moments of crying and laughing, and a range of emotions while I was watching it, so yeah, definitely very powerful. And I guess it's really great for other families going through similar circumstances, for their families to see what's happening and, you know, there's a lot that can be learned from the programme as well. So, you know, it's, yeah, really a powerful piece that you put together. Sarah Wynn: I would really like to echo that. I think Shaun and Sarah have said before that they didn't do it to represent everybody's experience, but actually that is exactly what it has provided. I would say that huge numbers of people are really grateful that that portrayal is there, so that they can be seen and heard and understood so brilliantly. But it has provided other families with the opportunity to show it to their friends and family, so that they understand their life as well. And so I think it's had a hugely positive reaction from our Unique community. And I think it's not always an easy watch, I think lots of families would say it's challenging to see it up close in front of you, but I think it's really cathartic and has been just incredibly powerful at showing these sorts of stories, which, as you said, just don't get shown very often. And I think particularly when we think that rare conditions, although they're individually rare, if you put all of the rare chromosome conditions together, they're not actually that rare, so these are stories that are going on up and down the country and all over the world. Shaun Pye: Just to follow up on something Sarah said earlier on about, you can take as much or little as you like from Unique, it's the same with the show. I've had lots of people get in touch with me or talk to me in person and say, “I'm really sorry, I tried to watch ‘There She Goes' and I can't watch it,” and I have to say, “Don't apologise, you have nothing to apologise for. You take what you need from it. If you can't watch it then don't watch it. If you can watch it then do. There is literally no right or wrong way of doing this. There really isn't.” But having said that, the nicest comment – well, one of the nicest comments I've seen was on the DYRK1A forum. It was someone who casually referred to it as “our show,” as in the DYRK1A community, it belongs to them, and that – yeah, a little tear, a little tear went down my face [laughter]. Naimah: Yeah, that must have been a lovely thing for you to read. That's really nice. Sarah Wynn: Also from the Unique and general people who have rare conditions community, it's been so fantastic for raising awareness about genetic testing and rare conditions in general, and, you know, there just isn't – because these stories don't get talked about or shown about very often, it's been really great from that point of view as well. Naimah: And hopefully this will be the catalyst for similar programmes and, you know, more things in the mainstream media as well. And you did touch on it briefly there, Sarah, about, you know, what the programme's meant for Unique, you know, and the Unique community being very supportive, but have more people reached out to Unique since the programme? Sarah Wynn: I think the main takeaway is that being heard, “Our family's being heard and represented,” which I think is really important. But yes, we've got lots and lots of new families that have come to us through watching There She Goes. And it was really fortuitous that when the special aired last spring/summer, it was the evening before our awareness day, which I think was a complete coincidence but actually turned out to be really great timing. So, we got lots and lots of new families get in touch with us, many of whom then went on to join us. But actually what it also did was get lots of members who'd been members for a long time but perhaps had been a bit quiet, or hadn't been in touch, so it sort of also reinvigorated that engagement from other members who we might not have heard about for ages, and who might have got older children and had been in touch at the point when they were diagnosed, and then hadn't been. So, it has just been such a brilliant, brilliant experience to have Unique as part of it. And I think that's really important. At Unique, we have members from 120 different countries, and the reason is that when you have these rare conditions, you're really unlikely to find someone in the same town as you, possibly not even the same country with some rare conditions, and so the idea that you can connect with people all over the world I think is really important, particularly in rare conditions. Naimah: Yeah, that's great, and hopefully, you know, it just continues to increase support with Unique and, you know, families know they can still come to you as a resource and as that continues. So, I just wanted to kind of wrap up here and come to the final question. So, you know, your story highlights a lot of challenges, a lot of difficulties, a lot of ups and downs, but I just wondered, Shaun and Sarah, if you had any advice for other parents going through similar circumstances. Shaun Pye: Yeah, I think one of the things is what I just said, which is I would tell people there's no right or wrong way of doing this. I would say, from my experience, don't be hard on yourself, and you're going to think that you wish it never happened to you and that's fine. That is absolutely fine. That's normal. We've all thought that. It doesn't make you a bad parent. It makes you a normal human being. I would say to get in touch with Unique. I shied away a little bit from help and charities, ‘cos I think it was a sort of pride. I think I had a preconception that it would be glass half full, put on a happy smile, best foot forward, blitz spirit sort of. We have encountered it a little bit over the years, not very much, but we've encountered a little bit of, you know, “As long as you love them, that's the most important thing,” and, you know, which is fine and that is an okay perspective to have, but there are times when it's just not what you want to hear. I want to be allowed to feel the feelings that I'm having without feeling guilty. So, I would encourage people to seek support from Unique or from wherever. But, you know, generally, the thing I've learnt about people is that the vast, vast majority of people are nice and kind and understanding about this. Not everyone, but most people are good people and, you know, people should remember that, I think. Sarah Crawford: Yeah. I mean, the first thing I was going to say in terms of advice to other people was something Shaun said already, which is the don't be harsh on yourself, because, you know, you're allowed to find it difficult. But I would also say it's okay to grieve the child that you didn't have that you thought you were going to have. I just think that's so important. And I think for me, the most difficult thing in the early couple of years was feeling like I couldn't do that because nobody appreciated that I'd actually lost anything. The world seems to use the word difference a lot at the minute, you know, “These children are different, they're differently abled,” but actually it is disability [laughter], and it is more difficult, you know. There are rewards, there are positives, but, you know, she's 17 and a half now, our daughter. When our son was 17 and a half, you know, the challenges were different, but they were also nowhere near as big [laughter], and I don't think that should get lost. Because I think parents need to feel it's okay to get the help they need and to push for the help they need, and not feel like they've just got to kind of put on a brave face and, you know, as Shaun was saying, the attitude sometimes of, “Well, you've just got to get on with it.” Because while you do, actually, you know, you do need help to do that. It is difficult. Shaun Pye: The only other thing I'd say is, just ‘cos Sarah just mentioned it and it gets forgotten, is the siblings thing. The families with Unique will have all manner of different configurations. I can only speak from our own experience, but Joey has an elder brother, Frank, who is, well, in my opinion, the best human being in the world [laughter], and I'm sure in his mother's opinion as well, but my experience, never forget about the toll it takes on siblings. ‘Cos Frank is a very, very loving brother. Only last night, Joey was typing, “Frank book.” ‘Cos he's gone to university, she likes looking at pictures of him in the photo albums. She likes looking at pictures of old toys mainly. Sarah Crawford: Yeah, yeah, she likes looking at her as a baby and the toys they had. Shaun Pye: Yeah, but it's not really advice, it's just, you know, there's a danger that Joey could have taken over our entire family life, and especially Sarah made sure that didn't happen and that, you know, we were a unit and he was – but, you know, it is possible that it can swallow up your entire life. [Music] Naimah: Okay, so we'll wrap the interview up there. Thank you so much to our guests, Shaun Pye, Sarah Crawford and Sarah Wynn for joining us today as we discussed Shaun and Sarah's journey to Joey's diagnosis, and how charities like Unique can support families of those living with rare conditions. If you'd like to hear more like this, please subscribe to the G Word on your favourite podcast app. Thank you for listening. I've been your host and producer, Naimah Callachand, and this podcast was edited by Bill Griffin at Ventoux Digital.

Bob  Andrews in conversation with David Eastaugh http://neworleanspiano.com/ http://neworleanspiano.com/minaandbob.html Bob Andrews - I grew up in the thick of the 60's British music scene, beginning my musical career in 1966, and spent thirteen years on the road honing my Hammond organ and piano skills with cult bands BRINSLEY SCHWARZ and GRAHAM PARKER and THE RUMOUR. In the 80's as a producer my credits included “THERE SHE GOES” by The La's and UK top ten hits for THE BLUEBELLS and several STIFF RECORDS artists. At the turn of the 90's I moved to New Orleans, Louisiana, becoming in demand as a live performer. I currently live and work in Taos, New Mexico.

This week on One Hit Thunder, we're joined by Wolves of Glendale keyboardist and vocalist Tom McGovern to explore the enigmatic world of The La's and their timeless hit “There She Goes”. This episode is a tale of potential unfulfilled, as The La's were seemingly destined for Britpop fame and fortune, only to be stymied by their own strange choices. Did The La's bring the thunder despite getting in their own way time and time again? Stay tuned to find out. If you like the show, be sure to rate, review, and subscribe.  Email us at onehitthunderpodcast@gmail.com. Also, follow us on Instagram: @‌onehitthunderpodcast Wanna create your own podcast? Contact us at We Know Podcasting for more information. Visit Punchline: A Band Called Punchline | Pittsburgh, PA for tour dates, news, and merch. Sign up for more One Hit Thunder on our Patreon Learn more about your ad choices. Visit megaphone.fm/adchoices

In our first ever Gilmore Girls podcast for superfans by superfans, we tackle the first few references in the pilot including  Jack Kerouac and why we think this could be a bit of foreshadowing! We also discuss who is leading and following in Carole Kings theme song. We chat about a NEVER BEFORE SEEN deleted scene! And so much more! If you love fall, Gilmore Girls, fast talking and coffee please make sure to leave us a review and reach out to us on instagram to share all your thoughts with us! We hope to share what we learn from you in future episodes as well so please do message us we cannot wait to talk to you! We cover: There She Goes by the Lala's Jack Kerouac Ru Paul Macy Gray Officer Krupke Where You Lead I Will Follow by Carole King Nose Whistler AND the record for the longest nose Woodstock 99  A Deleted Scene with Derek?! And so much more! Find us on instagram here: Tyler & Shae - Hosts of a Gilmore Girls podcast (@oywiththepodalready) • Instagram photos and videos    

We've been spoiling you on the podcast with a lot of great chats with female TV writers of late, but some stuff we watch is written by men, too. If you can believe it.This month we're talking about Best Interests, The Gallows Pole, Black Mirror, Shrinking, There She Goes, White House Plumbers and Idris on a Plane*.* Actually called Hijack, which we can all agree is a missed opportunity.You can hear Hannah's chat with McLennan and McCartney about Deadloch here: https://play.acast.com/s/standardissuespodcast/sim-ep-863-chops-259-mclennan-mccartney-australias-lennon-mc You can hear her talking to Bridget Christie about The Change here: https://play.acast.com/s/standardissuespodcast/sim-866-chops-261-christie-almightySupport this show http://supporter.acast.com/standardissuespodcast. Hosted on Acast. See acast.com/privacy for more information.

Continuando con la línea de podcast anteriores, he creado una lista de canciones de artistas Indies o Alternativos de los 80s, algunos muy conocidos y otros que se han convertido con los años en grupos de culto. Como canción principal he seleccionado la maravillosa canción de los Echo & The Bunnymen que da título al podcast. Como bien dije, arrancamos con los Bunnymen y su preciosa “Bring on The Dancing Horses” publicado en Octubre del 85 como single y formando parte del grandes éxitos de aquel año “Songs to Learn & Sing”. Una preciosa melodía melancólica con toques de psicodelia convirtió el single en uno de los más vendidos del grupo. The Waterboys y su “The Pan Within” el cual no fue nunca single pero con el tiempo llego a convertirse en una de las canciones favoritas de los seguidores de Mike Scott y compañía. Este tema pertenece a su tercer álbum “This is the sea” su disco más exitoso y épico publicado en 1985. The La's y su (único) gran single “There She Goes”. Originales de Liverpool, comenzaron en 1984, publicaron solo un disco en 1990 y todos coinciden que fueron unos de los precursores del BritPop que revoluciono el Reino Unido entre 1994 y 1997. Lloyd Cole & The Commotions, “Jennifer She said”. Originales de Glasgow, estuvieron en activo entre el 84 y el 89. Lloyd Cole continuaría con una carrera solista con más de 10 álbumes publicados. Esta canción se editó como single en 1987, fue el segundo sencillo de su tercer y último álbum “Mainstream”, convirtiéndose en uno de las canciones más populares de la banda. The Stone Roses, “She Bangs The Drums”. Que más se puede agregar a esta altura sobre la corta e intensa carrera de los de Manchester. Publicaron uno de los mejores discos de la historia, sonaron en todas las radios independientes de la época, fueron portada de las principales revistas musicales. Prácticamente todas las canciones del disco fueron lanzadas como single. Todo esto en solo 2 años para luego desaparecer lentamente, en el 94 publicaron su segundo disco, pero la magia había desaparecido. The Smiths, “Some Girls Are Bigger Than Other”. Mismo caso que el anterior, ya nada se puede agregar sobre los Smiths, salvo decir que esta canción pertenece a su maravilloso tercer álbum “The Queen Is Dead”. Oficialmente no se publicó como single, aunque existen algunas copias como tal, una tirada pequeña que se lanzó en Alemania. The Woodentops, “Good Thing”. Originales de Londres, publicaron discos entre 1985 y 1988. Good Thing es un sensillo que pertenece a tu segundo álbum “Giant” (1986) . Lanzaron algunos singles de moderado éxito en las islas y parte de Europa. Con un sonido que a muchos puede recordar a The Housemartins. Everything But The Girl, "When All's Well”. Grupo de origen Indie Pop con toques de Jazz, pasando por el Pop ochentero y acabando como una banda de electrónica en los 90s, pero siempre conservando su sello independiente. La canción se editó como single en 1985 muy influenciado por el sonido de gitarras de los Smiths. The Housemartins, “Bow Down”. Una de sus canciones más bonitas, que no se llegó a lanzar con single, pertenece al segundo y último disco de la banda, publicado en 1987. Poco tiempo después anunciaron su disolución. Como dato curioso, uno de sus integrantes, el que tocaba el bajo, no era otro que Norman Cook, más conocido por Fatboy Slim. Modern English, "I Melt with You”. Grupo inglés de New Wave, comenzaron en 1977 y continúan realizado giras por el Reino Unido. La canción es su mayor éxito hasta la fecha, publicado en 1982. The Essence, “Only For You”. Formación original de Rotterdam (Holanda), comenzaron en 1984 y a mediados de los 90s publicaron su último disco. Como dato decir que es muy evidente la influencia de The Cure, sobretodo la forma de cantar de Hans Diener recuerda mucho a Robert Smith. The Cure, “Lovesong”. Y hablando de Robert Smith y compañía. Single extraído de su exitoso y magnifico álbum “Disintegration” (1989). The Psychedelic Furs, “Heaven”. Single extraído de su álbum “Mirror Moves” de 1984 Primal Scream, “Velocity Girl”. Single inédito, publicado en el recopilatorio de artistas emergentes de la revista NME en 1986. Peter Murphy, “Cuts You Up”. El ex líder de Bauhaus comenzó su carrera solista al disolverse el grupo, publicando muy buenos discos en los 80s. Esta canción pertenece a su tercer álbum “Deep” publicado en 1989. Héroes del Silencio, "Héroe De Leyenda (Versión Maxi)". Grupo español de Rock Alternativo, influenciado por el Post-Punk y la New Wave. Logrando gran éxito en países como Alemania durante la década de los 90s. este tema, en versión extendida, pertenece a su EP homónimo lanzado en 1987. The Chameleons, “Tears”. Grupo de culto, originales de Middleton. Single de 1986, perteneciente a su disco “Strange Times”. The House Of Love, "I Don't Know Why I Love You”. Grupo Londinense de Rock Alternativo, con varios discos publicados entre los 80s y los 90s. Su mayor éxito fue esta canción, publicada como single en 1989. The Mighty Lemon Drop, "Inside Out (12'' Version)". Banda inglesa de Post-Punk muy influenciada por Echo & The Bunnymen. En activo entre 1985 y 1993. La canción se editó como single en 1988 convirtiéndose en su mayor éxito. Espero que os agrade el Podcast y ayude a conocer alguna de estas maravillosas canciones. TRACKLIST: 01 - Echo & The Bunnymen - Bring On The Dancing Horses 02 - The Waterboys - The Pan Within 03 - The La's - There She Goes 04 - Lloyd Cole And The Commotions - Jennifer She Said 05 - The Stone Roses - She Bangs The Drums 06 - The Smiths - Some Girls Are Bigger Than Others 07 - The Woodentops - Good Thing 08 - Everything But The Girl - When All's Well 09 - The Housemartins - Bow Down 10 - I Melt with You (7' mix) 11 - The Essence - Only For You 12 - The Cure - Lovesong 13 - The Psychedelic Furs - Heaven 14 - Primal Scream - Velocity Girl 15 - Peter Murphy - Cuts You Up 16 - Héroes del Silencio - Héroe De Leyenda (Versión Maxi) 17 - The Chameleons - Tears (Full Arrangement) 18 - The House Of Love - I Don't Know Why I Love You (7" Version) 19 - The Mighty Lemon Drop - Inside Out (12'' Version)

Continuando con la línea de podcast anteriores, he creado una lista de canciones de artistas Indies o Alternativos de los 80s, algunos muy conocidos y otros que se han convertido con los años en grupos de culto. Como canción principal he seleccionado la maravillosa canción de los Echo & The Bunnymen que da título al podcast. Como bien dije, arrancamos con los Bunnymen y su preciosa “Bring on The Dancing Horses” publicado en Octubre del 85 como single y formando parte del grandes éxitos de aquel año “Songs to Learn & Sing”. Una preciosa melodía melancólica con toques de psicodelia convirtió el single en uno de los más vendidos del grupo. The Waterboys y su “The Pan Within” el cual no fue nunca single pero con el tiempo llego a convertirse en una de las canciones favoritas de los seguidores de Mike Scott y compañía. Este tema pertenece a su tercer álbum “This is the sea” su disco más exitoso y épico publicado en 1985. The La’s y su (único) gran single “There She Goes”. Originales de Liverpool, comenzaron en 1984, publicaron solo un disco en 1990 y todos coinciden que fueron unos de los precursores del BritPop que revoluciono el Reino Unido entre 1994 y 1997. Lloyd Cole & The Commotions, “Jennifer She said”. Originales de Glasgow, estuvieron en activo entre el 84 y el 89. Lloyd Cole continuaría con una carrera solista con más de 10 álbumes publicados. Esta canción se editó como single en 1987, fue el segundo sencillo de su tercer y último álbum “Mainstream”, convirtiéndose en uno de las canciones más populares de la banda. The Stone Roses, “She Bangs The Drums”. Que más se puede agregar a esta altura sobre la corta e intensa carrera de los de Manchester. Publicaron uno de los mejores discos de la historia, sonaron en todas las radios independientes de la época, fueron portada de las principales revistas musicales. Prácticamente todas las canciones del disco fueron lanzadas como single. Todo esto en solo 2 años para luego desaparecer lentamente, en el 94 publicaron su segundo disco, pero la magia había desaparecido. The Smiths, “Some Girls Are Bigger Than Other”. Mismo caso que el anterior, ya nada se puede agregar sobre los Smiths, salvo decir que esta canción pertenece a su maravilloso tercer álbum “The Queen Is Dead”. Oficialmente no se publicó como single, aunque existen algunas copias como tal, una tirada pequeña que se lanzó en Alemania. The Woodentops, “Good Thing”. Originales de Londres, publicaron discos entre 1985 y 1988. Good Thing es un sensillo que pertenece a tu segundo álbum “Giant” (1986) . Lanzaron algunos singles de moderado éxito en las islas y parte de Europa. Con un sonido que a muchos puede recordar a The Housemartins. Everything But The Girl, "When All's Well”. Grupo de origen Indie Pop con toques de Jazz, pasando por el Pop ochentero y acabando como una banda de electrónica en los 90s, pero siempre conservando su sello independiente. La canción se editó como single en 1985 muy influenciado por el sonido de gitarras de los Smiths. The Housemartins, “Bow Down”. Una de sus canciones más bonitas, que no se llegó a lanzar con single, pertenece al segundo y último disco de la banda, publicado en 1987. Poco tiempo después anunciaron su disolución. Como dato curioso, uno de sus integrantes, el que tocaba el bajo, no era otro que Norman Cook, más conocido por Fatboy Slim. Modern English, "I Melt with You”. Grupo inglés de New Wave, comenzaron en 1977 y continúan realizado giras por el Reino Unido. La canción es su mayor éxito hasta la fecha, publicado en 1982. The Essence, “Only For You”. Formación original de Rotterdam (Holanda), comenzaron en 1984 y a mediados de los 90s publicaron su último disco. Como dato decir que es muy evidente la influencia de The Cure, sobretodo la forma de cantar de Hans Diener recuerda mucho a Robert Smith. The Cure, “Lovesong”. Y hablando de Robert Smith y compañía. Single extraído de su exitoso y magnifico álbum “Disintegration” (1989). The Psychedelic Furs, “Heaven”. Single extraído de su álbum “Mirror Moves” de 1984 Primal Scream, “Velocity Girl”. Single inédito, publicado en el recopilatorio de artistas emergentes de la revista NME en 1986. Peter Murphy, “Cuts You Up”. El ex líder de Bauhaus comenzó su carrera solista al disolverse el grupo, publicando muy buenos discos en los 80s. Esta canción pertenece a su tercer álbum “Deep” publicado en 1989. Héroes del Silencio, "Héroe De Leyenda (Versión Maxi)". Grupo español de Rock Alternativo, influenciado por el Post-Punk y la New Wave. Logrando gran éxito en países como Alemania durante la década de los 90s. este tema, en versión extendida, pertenece a su EP homónimo lanzado en 1987. The Chameleons, “Tears”. Grupo de culto, originales de Middleton. Single de 1986, perteneciente a su disco “Strange Times”. The House Of Love, "I Don't Know Why I Love You”. Grupo Londinense de Rock Alternativo, con varios discos publicados entre los 80s y los 90s. Su mayor éxito fue esta canción, publicada como single en 1989. The Mighty Lemon Drop, "Inside Out (12'' Version)". Banda inglesa de Post-Punk muy influenciada por Echo & The Bunnymen. En activo entre 1985 y 1993. La canción se editó como single en 1988 convirtiéndose en su mayor éxito. Espero que os agrade el Podcast y ayude a conocer alguna de estas maravillosas canciones. TRACKLIST: 01 - Echo & The Bunnymen - Bring On The Dancing Horses 02 - The Waterboys - The Pan Within 03 - The La's - There She Goes 04 - Lloyd Cole And The Commotions - Jennifer She Said 05 - The Stone Roses - She Bangs The Drums 06 - The Smiths - Some Girls Are Bigger Than Others 07 - The Woodentops - Good Thing 08 - Everything But The Girl - When All's Well 09 - The Housemartins - Bow Down 10 - I Melt with You (7' mix) 11 - The Essence - Only For You 12 - The Cure - Lovesong 13 - The Psychedelic Furs - Heaven 14 - Primal Scream - Velocity Girl 15 - Peter Murphy - Cuts You Up 16 - Héroes del Silencio - Héroe De Leyenda (Versión Maxi) 17 - The Chameleons - Tears (Full Arrangement) 18 - The House Of Love - I Don't Know Why I Love You (7" Version) 19 - The Mighty Lemon Drop - Inside Out (12'' Version)

Will and Anurag discuss new releases by Feist, the Murder Capital, and Young Fathers, plus bonus songs of the week.

After they chat a bit more about Roachford, music producer Steve Baker plays the tunes, Joe listens along in the make believe listening booth and David provides a running commentary while guessing if any of the three songs will make Joe's play list.Songs this week: Only You by Steve Monite, Wildfire by SBTRKT & Little Dragon, There She Goes my Beautiful World by Nick Cave & the Bad SeedsSONGS HEREhttps://open.spotify.com/playlist/2MZdavYaMRmB03YpUPKwxQ?si=2bdaf57eec784811Follow Chatabix on Twitter & Instagram:twitter.com/chatabix1www.instagram.com/chatabixpodcast/Patreon for early access to our eps: https://www.patreon.com/chatabixCrunchy fresh tees and hoodies: https://chatabixshop.com/ Hosted on Acast. See acast.com/privacy for more information.

The Way Home Season 1 Episode 3 Recap ‘I Don't Want to Miss a Thing' Megan and Wendy recap Hallmark Channel's new hit series "The Way Home." What to expect: a recap, scene by scene, with commentary about the Landry family trauma and theories about Jacob's disappearance. Also, "Noticed in the 90s" and "Homie of the Week." Email the show at meganandwendy@gmail.com. Girls Gone Hallmark is a weekly Hallmark movie review podcast. Listen as they recap the brand new Hallmark Channel series "The Way Home" starring Andie McDowell. Kat starts a new job at the local paper and finds herself covering a much different kind of story than she did in Minneapolis. The reporter in her becomes suspicious of Alice's newfound contentment in Port Haven which, unbeknownst to her, is fueled by the time Alice is spending in the past with the Landrys during a happier time. Meanwhile, when Del gets an offer to buy the boat Colton bought for them, the prospect of selling it stirs up mixed emotions. Photo: David Webster, Sadie Laflamme-Snow, Alex Hook Credit: ©2023 Hallmark Media/Photographer: Michael Tompkins News and Notes about "The Way Home" Episode 3 Episode 3 was directed by Nimisha Murkerji. Award-winning writer, director, and producer. Her breakout film was called "65_RedRoses" about a woman's battle with Cystic Fibrosis. This film was initially selected by Oprah Winfrey for her Documentary Club on OWN before being acquired by Netflix and Hulu. Other director credits include Disney+ "Big Shots," "Big Sky," and "Virgin River." Hallmark Channel scoring big views with "The Way Home". This week's episode pulled in 1.4 million live viewers as reported by Showbuzzdaily.com. Songs included in "The Way Home" episode 3: "There She Goes" - originally released by The La's in 1989 and re-released by Sixpence None the Richer in 1999 for the movie "Snow Day." This song also appears in episode 1 of "Gilmore Girls." "...Baby One More Time" by Britney Spears. This was the best selling single of 1999. Notable references in this week's episode included: "Back to the Future" (1988) Red Hot Chili Pepper's "Californication" (1999) Dial up modems

HAPPY 30th BIRTHDAY TO LEIGH! In this celebratory special, Leigh talks glamour magic through the 1999 romance/comedy movie She's All That, while Lori takes on anthropomorphism through one of the worst films ever made, 1986's Howard the Duck.FACT CHECK: The song that plays at the beginning of Gilmore Girls is There She Goes.MERCH! MERCH! MERCH!RECOMMENDATIONSUNCLE BOB'S MAGIC CABINET PODCASTPO BOX 12738PITTSBURGH, PA 15241Support the show

After an eventful series four of everyone's favourite haunted house sitcom, Hannah catches up with two of its stars and co-writers, Jim Howick and Ben Willbond, to talk about sucking off Mary, dealing with grief, fan art, Christmas specials, There She Goes, working with Guillermo del Toro – and more. Support this show http://supporter.acast.com/standardissuespodcast. Hosted on Acast. See acast.com/privacy for more information.

Hi friendsWell, I had someone who had to change plans last minute this week, so I texted my friend Brian Fallon, you know, from the Singles episode and said "do you want to talk to me about So I Married An Axe Murderer today" and he said name the time and I'm there.So, today we welcome back returning guest Brian Fallon to talk about the So I Married An Axe Murderer soundtrack, salsa commercials, Springsteen's cowboy hat era and what a burden writing a song as good as "There She Goes" must be. You can follow Brian Fallon on Twitter and Instagram, you can follow his band The Gaslight Anthem on Twitter and InstagramYou can follow me, Niko Stratis, on Twitter and InstagramYou can follow the show on Twitter and Instagram

Gen says ‘you can be surrounded by people but if none of those people ‘get it' it can be incredibly isolating. The loneliest I felt was strongest when I realised, I had lost my identity, Gen had gone, only Mummy remained. Finding a community who ‘get it', support you, encourage you, laugh with you, cry with you, rant with you allowed me to begin to find Gen again.' Our interview with Gen discusses struggles with mental health as a result of the breakdown of her relationship with Dylan's Dad and the added stresses of having to move back in with your parents as a new mother. Coping as a single parent of a disabled child and how that manifested in day to day life. We discuss coping strategies and trauma responses around project managing medical care, appointments and therapies, socialising and early years parenting. Gen talks to us about how important self care is for her and her healing journey through yoga and meditation.Guest BiographyGenevieve Porritt grew up in North London and had a career in the fashion industry before fulfilling a life purpose of becoming a Mum to Dylan in 2016. Dylan was born with Ullrich Congenital Muscular Dystrophy, a genetic muscle wasting condition which affects him physically. Genevieve and Dylan's Dad split in 2017 and they moved back to North London from Croydon, they now live in Tufnell Park and Genevieve is Dylan's main carer, she is a passionate advocate for the importance of self care particularly within our community, she loves open water swimming, yoga and writing poetry and with any spare time she has contributes to the production of the podcast!Episode TranscriptEpisode 1: Loneliness — Fking Normal PodcastResourcesIn this episode we discuss several resources which individually helped us as parents of disabled children.There She Goes - originally broadcast by the BBC, There She Goes is a comedy drama that shines a light on the day-to-day life of a family looking after their severely learning disabled girl, Rosie.https://www.bbc.co.uk › programmesIt is now being shown on Britbox. Far from the Tree : Parents, Children and the Search for Identity - Andrew Solomon tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so.https://andrewsolomon.com/books/far-from-the-tree/Not What I Expected: Help and Hope for Parents of Atypical Children - Rita Eichenstein PhD, paediatric neuropsychologist presents strategies to help parents of special-needs children navigate the emotional challenges they face.https://www.amazon.co.uk/Not-What-Expected-Atypical-ChildrenHypotonia UK Facebook Group - a supportive private Facebook group for parents of children with diagnosed Hypotonia usually a symptom of another condition. Based in the UKhttps://www.facebook.com/groups/350373958646991/ Hosted on Acast. See acast.com/privacy for more information.

En pleno verano que mejor que una lista de canciones frescas, de buen rollo e ideales para escuchar en la piscina o en la playa? Cabe aclarar que no se trata de las típicas canciones de verano de los 80s, sino algo diferente. En este podcast podréis escuchar desde el synthpop ochentero de Orchestral Manoeuvres In The Dark al Indie Pop de artistas como The Smiths, The Housemartins, etc. Arrancamos con Everything But The Girl y su “When All's Well”, puro Indie Pop ochentero buenrollero, lo mismo ocurre con la siguiente “So Good Today” de los londinenses “The Woodentops”. Mención especial para The Housemartins que con solo dos discos revolucionaron el Indie mundial, hoy injustamente olvidados, aquí podemos escuchar su “Me & The Farmer”. Contemporáneos a The Smiths, los siguientes de la lista, aquí podemos escuchar uno de sus mayores éxitos “Ask”. A esta altura que mas se puede decir de los Smiths? Que fueron uno de los grupos MAS importantes de la década e incluso de la historia musical del Reino Unido, que marcaron a varias generaciones que crecimos con sus canciones… Llega el turno de The Go-Betweens, banda de New Wave procedentes de Australia, aquí podemos escuchar su gran éxito en el circuito de radios alternativas “Right Here”. Los siguientes Lloyd Cole And The Commotions, banda de Glasgow, mitad de camino entre el New Wave, el Indie Pop y hasta el Britpop. Aquí podéis escuchar su mayor éxito que fue “Lost Weekend”. Fairground Attraction, banda británica a mitad de camino entre el Folk y el Rock, solo tienen un álbum y un single que sonó en todas partes e incluso todo tipo de anuncios publicitarios, “Perfect”. The La's cuyo single “There She Goes” se publicó originalmente en el año 1988 pero luego fue lanzado nuevamente en el año '90 apoyando la publicación de su único álbum. Precursores de lo que luego se denominaría Britpop. The Cure y su majestuoso “Just Like Heaven” de 1987, tercer corte de su exitoso álbum Kiss Me Kiss Me Kiss Me. Seguimos con The The, el proyecto de Matt Johnson, en 1983 publico su aclamado álbum debut Soul Mining de donde procede el maravilloso single “This is The Day”. The Adventures y el remix de 1985 “Send My Heart” publicado como single en 1984 contando con un Extended Mix en el formato de 12 pulgadas, pero un año después se publica en Estados Unidos con la remezcla que podéis escuchar en este podcast. Aztec Camera y la versión 12 pulgadas de “Somewhere in My Heart” del año '88, esta versión tiene mucho mas fuerza que la versión de 7 pulgadas, lo mismo ocurre con “Sanctify Yourself (Extended Mix)” de Simple Minds. Seguimos con Echo & The Bunnymen y “The Game” del año 1987, una canción Pop sencilla y preciosa. Y llegamos al final con 3 exponentes del Synthpop británico, Orchestral Manouvres in The Dark con el Extended Mix de Secret de 1985 (a esta altura de la década el grupo había dejado su sonido más electrónico para adentrarse en el pop ochentero de sintetizador). Erasure con el primer corte de su segundo disco The Circus, “Sometimes” del año '86 con el que lograron el éxito no alcanzado con su primer álbum. Y por último, New Order con su éxito de 1987 “True Faith”, single que acompaño al lanzamiento del álbum de versiones extendidas Substance. Hasta aquí el listado de canciones de mi podcast veraniego, espero que disfrutéis al sol o en la piscina o tumbados en una playa. TRACKLIST: 01 - Everything But The Girl - When All's Well 02 - The Woodentops - So Good Today 03 - The Housemartins - Me And The Farmer 04 - The Smiths - Ask 05 - The Go Betweens - Right Here 06 - Lloyd Cole And The Commotions - Lost Weekend 07 - Fairground Attraction - Perfect 08 - The La's - There She Goes 09 - The Cure - Just Like Heaven 10 - The The - This Is the Day 11 - The Adventures - Send My Heart (Across The Sea Mix) 12 - Aztec Camera - Somewhere In My Heart (12" Remix) 13 - Simple Minds - Sanctify Yourself (Extended Mix) 14 - Echo & The Bunnymen - The Game 15 - Orchestral Manoeuvres In The Dark - Secret (Extended Mix) 16 - Erasure - Sometimes 17 - New Order - True Faith

En pleno verano que mejor que una lista de canciones frescas, de buen rollo e ideales para escuchar en la piscina o en la playa? Cabe aclarar que no se trata de las típicas canciones de verano de los 80s, sino algo diferente. En este podcast podréis escuchar desde el synthpop ochentero de Orchestral Manoeuvres In The Dark al Indie Pop de artistas como The Smiths, The Housemartins, etc. Arrancamos con Everything But The Girl y su “When All’s Well”, puro Indie Pop ochentero buenrollero, lo mismo ocurre con la siguiente “So Good Today” de los londinenses “The Woodentops”. Mención especial para The Housemartins que con solo dos discos revolucionaron el Indie mundial, hoy injustamente olvidados, aquí podemos escuchar su “Me & The Farmer”. Contemporáneos a The Smiths, los siguientes de la lista, aquí podemos escuchar uno de sus mayores éxitos “Ask”. A esta altura que mas se puede decir de los Smiths? Que fueron uno de los grupos MAS importantes de la década e incluso de la historia musical del Reino Unido, que marcaron a varias generaciones que crecimos con sus canciones… Llega el turno de The Go-Betweens, banda de New Wave procedentes de Australia, aquí podemos escuchar su gran éxito en el circuito de radios alternativas “Right Here”. Los siguientes Lloyd Cole And The Commotions, banda de Glasgow, mitad de camino entre el New Wave, el Indie Pop y hasta el Britpop. Aquí podéis escuchar su mayor éxito que fue “Lost Weekend”. Fairground Attraction, banda británica a mitad de camino entre el Folk y el Rock, solo tienen un álbum y un single que sonó en todas partes e incluso todo tipo de anuncios publicitarios, “Perfect”. The La’s cuyo single “There She Goes” se publicó originalmente en el año 1988 pero luego fue lanzado nuevamente en el año ’90 apoyando la publicación de su único álbum. Precursores de lo que luego se denominaría Britpop. The Cure y su majestuoso “Just Like Heaven” de 1987, tercer corte de su exitoso álbum Kiss Me Kiss Me Kiss Me. Seguimos con The The, el proyecto de Matt Johnson, en 1983 publico su aclamado álbum debut Soul Mining de donde procede el maravilloso single “This is The Day”. The Adventures y el remix de 1985 “Send My Heart” publicado como single en 1984 contando con un Extended Mix en el formato de 12 pulgadas, pero un año después se publica en Estados Unidos con la remezcla que podéis escuchar en este podcast. Aztec Camera y la versión 12 pulgadas de “Somewhere in My Heart” del año ’88, esta versión tiene mucho mas fuerza que la versión de 7 pulgadas, lo mismo ocurre con “Sanctify Yourself (Extended Mix)” de Simple Minds. Seguimos con Echo & The Bunnymen y “The Game” del año 1987, una canción Pop sencilla y preciosa. Y llegamos al final con 3 exponentes del Synthpop británico, Orchestral Manouvres in The Dark con el Extended Mix de Secret de 1985 (a esta altura de la década el grupo había dejado su sonido más electrónico para adentrarse en el pop ochentero de sintetizador). Erasure con el primer corte de su segundo disco The Circus, “Sometimes” del año ’86 con el que lograron el éxito no alcanzado con su primer álbum. Y por último, New Order con su éxito de 1987 “True Faith”, single que acompaño al lanzamiento del álbum de versiones extendidas Substance. Hasta aquí el listado de canciones de mi podcast veraniego, espero que disfrutéis al sol o en la piscina o tumbados en una playa. TRACKLIST: 01 - Everything But The Girl - When All's Well 02 - The Woodentops - So Good Today 03 - The Housemartins - Me And The Farmer 04 - The Smiths - Ask 05 - The Go Betweens - Right Here 06 - Lloyd Cole And The Commotions - Lost Weekend 07 - Fairground Attraction - Perfect 08 - The La's - There She Goes 09 - The Cure - Just Like Heaven 10 - The The - This Is the Day 11 - The Adventures - Send My Heart (Across The Sea Mix) 12 - Aztec Camera - Somewhere In My Heart (12" Remix) 13 - Simple Minds - Sanctify Yourself (Extended Mix) 14 - Echo & The Bunnymen - The Game 15 - Orchestral Manoeuvres In The Dark - Secret (Extended Mix) 16 - Erasure - Sometimes 17 - New Order - True Faith

On this episode we talk One-Hit-Wonders and also listen to the "The Kazoo Brothers' who perform some of your favorites live on our show. Don't miss this episode! *For the best listening experience, please get a free SPOTIFY account at Spotify.com so you can enjoy hearing the songs we are talking about on the show! Music and Lyrics By: The Newbeats (Bread and Butter), Chilliwack (My Girl. Gone Gone Gone), The A's (Womans Got the Power), The Proclaimers (I'm Gonna Be/ 500 Miles), Robert Hazard and the Heros (Escalator of Life), The La's (There She Goes), Looking Glass (Brandy/ You're a Fine Girl), Carl Douglass (Kung Foo Fighting). #Music #comedy #entertainment --- Send in a voice message: https://anchor.fm/finding-subjects-podcast/message

Episode 163: Of course, we begin with a quick Kate Bush update (HRT80s has never been so invested in a current Hot 100 chart), and then it's time to discuss some superstars from the R&B Chart. Last time we visited the subject, we left off on the letter H -- so get ready for info on Isaac Hayes, Leon Haywood, Heavy D and others. Number 163: Since it's episode 163, we are focusing on number 163 on Treblezine's top 200 songs of the 80's, which is "There She Goes" by UK act The La's. You know this song whether you were a fan back in the day, or maybe you're a fan of Gilmore Girls or Sixpence None the Richer. No judgment! 

We have been subjecting ourselves to THE PENTAVERATE for reasons it is hard to explain so when Johnny Utah responded to our call for suggestions of movies that listeners think are worth revisiting, Mike Myers 1993 follow up to the pop culture smash hit WAYNE'S WORLD seemed like a good fit with our viewing trends. It was a surprise to me though that this week's movie, SO I MARRIED AN AXE MURDERER, would reference the recent Netflix's series central conceit, proving the Canadian has had the idea in gestation for over 30 years.   Charlie (Myers) is a commitment phobic beat poet who meets butcher and potential serial killer Harriet (Nancy Travis) when purchasing a haggis at "Meats of The World" in San Francisco. Featuring many of the Myers staples which have persisted into his recent output; portraying multiple characters on screen (how long until a Mike Myers film only stars Mike Myers?), schediaphilia, genre or self-aware characters, euphemisms and Scottishness, this is a pretty mediocre movie with a decent idea at its core; the commitment phobic man who finds reasons not to be with women finally taking the plunge with someone only to find out that they are hiding a few secrets.  Sadly, the leads have absolutely no chemistry (and now that I think about it, Myers is sort of weirdly asexual given how much of his stuff is about innuendo and how often it relies on the reproductive parts of the human anatomy), and the jokes veer dangerously into bad comedy club style improv at times. It has an absolutely f****g awful 90's soundtrack featuring "There She Goes" on four occasions during the films run time and unironic use of the Spin Doctors "Two Princes", there are plot holes everywhere, Harriet is a terrible butcher and you know how concerned I am about proper meat preparation, and everyone's hair is appalling.  Given all of this it would seem a no-brainer that we would be advising that you give this one a wide berth but with the Bad Dads ultimate arbitration of taste reduced to a single question of "were you not entertained?" and most of us agreeing that there were enough good cameos, weird or unusual touches or sharp writing that we were to some degree or another, well, make of that what you will. Probably that we have terrible taste or that we're easily pleased simpletons, either are true.

There She Goes is a storytelling podcast. Travel stories, told by the women who wrote them. Pack your bags, cuz here we go....

This week Steve is joined by producer and artist, Paris Flacko. They sit down to chat about Babyface's 2001 Neptunes' track There She Goes. There's also the latest BBC ICECREAM news, a new track from Rakeem Miles, Nigo's debut show for Kenzo, P's new Tiffany glasses, and Steve goes on an old man rant about social media usage!There She Goes on YouTubeThere She Goes Live on YouTubeThere She Goes on GeniusThere She Goes on WikipediaThe Otherz linksParis Flacko's linksSteve on InstagramLatrelle / Mz Munchie infoLatrelle / Mz Munchie interview

This show I get to talk to Karaoke Hostess Cynthia Torrez. We talk about her time and experiences as a hostess, and share some of her stories. We also talk about the drink Jack's Tennessee Sweet Tea, and listen to the single "There She Goes," by Red Vox. Remember to Share, Like, Comment and Subscribe! www.heybartenderpodcast.com Manscaped: www.manscaped.com Use Promo Code "HEYBARTENDER" at checkout to get 20% off your purchase, and free shipping! Mint Mobile: https://mint-mobile.58dp.net/NKbqo Email: dude@heybartenderpodcast.com Instagram, Facebook, TikTok: @heybartenderpodcast --- Send in a voice message: https://anchor.fm/heybartenderpodcast/message Support this podcast: https://anchor.fm/heybartenderpodcast/support

Today, in honor of Father's Day, we travel around the world with Naomi Melati Bishop as she recounts her father's spectacular adventures -- and takes us on a mission to honor his final wishes. Naomi Melati Bishop was born in Indonesia to odd soul mates: a Javanese princess and a wild New Yorker dad. She moved to NYC when she was eleven, where she currently resides with her daughter and partner. Naomi earned her MFA at NYU's Graduate Creative Writing Program and works as a writer, editor, and teacher. Naomi runs an editing service, TheEdit.nyc, and is currently at work on her first book, a memoir about her mysterious origins, new motherhood, her parents' love story, and her inheritance of worldwide adventures.

Today we travel with Kimberley Lovato to Ireland, where, after a lifetime of sticking out -- she finds a sense of belonging, and an appreciation for what sets her apart. Kimberley's work has appeared in many publications, including The New York Times, National Geographic Traveler, Conde Nast Traveler, The Best Travel Writing, and the Saturday Evening Post. Kimberley is also the author of several travel-themed books, including Walnut Wine and Truffle Groves, which was awarded a gold Lowell Thomas award in 2012. "Pretty Red" first appeared in American Way in 2014 https://www.there-she-goes.co/

Today we travel with Maxine Rose Schur to Iran, where she finds unexpected warmth, comfort -- and trust -- through a silent twilight ritual with a stranger. Maxine is an award-winning children's book author and travel essayist, whose essays have appeared in numerous publications including The Los Angeles Times, the San Francisco Chronicle, and The Christian Science Monitor. Her memoir, Places in Time, was named the 2006 Best Travel Book of the Year by the North American Travel Journalists Association and was awarded a Gold Lowell Thomas award. The book will be reprinted in 2022 by Adelaide Books. First appeared in the Best Women's Travel Writing Volume 11

Today we travel with Abbie Kozolchyk as she makes her way to Suriname, Paraguay, Guyana and French Guiana, on an epic -- maybe even heroic -- personal quest to right a wrong. Abbie spent the first many years of her career in the world of women's magazines, where she wrote and edited for the likes of Glamour, Allure, and Cosmo. She is the author of the National Geographic book, The World's Most Romantic Destinations, and she has recently contributed to The New York Times, The Wall Street Journal, and the Los Angeles Times, among others.

Today we travel with Marcia DeSanctis to France, where, on a dark early morning at Mont St. Michel, she's reminded of the importance of vigilance, and the existence of angels. Marcia is the New York Times bestselling author of 100 Places in France Every Woman Should Go, and she contributes to Vogue, Town & Country, Travel & Leisure, O the Oprah Magazine, National Geographic Traveler, Tin House, The New York Times, and many other publications. Her book of essays, A HARD PLACE TO LEAVE, will be published in 2022.

Today we travel with Marcia DeSanctis to France, where, on a dark early morning at Mont St. Michel, she's reminded of the importance of vigilance, and the existence of angels. Maggie Downs is the author of the memoir Braver Than You Think: Around the World on the Trip of My (Mother's) Lifetime, published in 2020 by Counterpoint Press. Her work has been anthologized in Best Women's Travel Writing and Lonely Planet's True Stories From the World's Best Writers, and essays have appeared in The New York Times, The Washington Post, The Los Angeles Times, and McSweeney's, among others. She is based in Palm Springs, California.

Today we travel with Jill Robinson to Switzerland where she meets a stranger who teaches her that there is more than seeing with the eyes. Jill writes about travel and adventure for National Geographic, AFAR, Travel + Leisure, Outside, Food & Wine, Men's Journal, the San Francisco Chronicle, and many more. She's the editor for GuestLife Monterey Bay, and her book, 100 Things to Do in San Francisco Before You Die, 2nd edition, was released in 2018. She has won Lowell Thomas, Society of American Travel Writers, and American Society of Journalists and Authors awards.

There She Goes...AGAIN Today we're here with Faith Adiele in our first bonus episode of There She Goes … Again. We know we said we wouldn't be doing interviews, but we've heard the requests for follow-ups with our storytellers, so -on occasion- we'll be offering these short bonus episodes--in which one of our guests answers THREE questions that bring you a little deeper into her story. We visit with Faith to learn more about how her story ends and what she takes away from her time in Thailand.

Today we travel with Suzanne Roberts to Santorini, Greece, where a mother-daughter trip turns into an adventure that neither woman expected. Suzanne's books include the memoir in travel essays, Bad Tourist: Misadventures in Love and Travel, the memoir Almost Somewhere: Twenty-Eight Days on the John Muir Trail, the forthcoming essay collection Animal Bodies: On Death, Desire, and Other Difficulties, and four books of poems. She was named “The Next Great Travel Writer” by National Geographic's Traveler Magazine, and her work has appeared in The New York Times, CNN, Creative Nonfiction, Brevity, and elsewhere.

Today we travel with Mathangi Subramanian to Bangalore, India, where a young girl teaches her about pride, prayer, and the politics of desire. Mathangi is an Indian American writer and educator whose middle grades novel, Dear Mrs. Naidu, won the South Asia book award. Her novel A People's History of Heaven was a finalist for the LAMBDA literary awards and was longlisted for the PEN/Faulkner and the Center for Fiction first book prize. Her personal essays and op-eds have appeared in Harper's Bazaar, The Washington Post, Ms. Magazine, and Al Jazeera America, among others.

Today we travel with Natalie Baszile to southern Louisiana, to experience the healing power of FOOD. Natalie is the author of Queen Sugar, which has been adapted for a fifth television season by and co-produced by Ava DuVernay and Oprah Winfrey. Her new non-fiction book We Are Each Other's Harvest: Celebrating African American Farmers, Land & Memory, was published by HarperCollins in April, 2021.

Today, for our very first episode, we'll begin in the South, in New Orleans, with my co-host Kelly Chappie, telling the story behind the making of There She Goes. It involves very big oysters, very cheap cocktails, a few Tornado warnings, and a friendship that was waiting to happen.