Podcasts about ehc

Andres Ambühl ist der Rekordmann des Schweizer Eishockeys. Der Bündner hält selbst internationale Bestwerte, was Anzahl Länderspiele, WM-Teilnahmen und -Partien angeht. Im Sommer 2025 gewann er in Stockholm zum dritten Mal Silber - der gegen die USA verlorene Final war für den bald 42-Jährigen das letzte Spiel der Karriere.Marc Wieser nahm nur einmal an einer WM teil: 2016. Ausser jener Saison spielte der bald 38-Jährige nie für das Nationalteam, nicht einmal in Junioren-Auswahlen. Dennoch schaffte er es zu einer grossen nationalen Karriere mit vier Meistertiteln und 1007 Spielen in der höchsten Liga.Im letzten Eisbrecher der Saison 24/25 blicken die beiden diesen Sommer zurückgetretenen Stürmer des HC Davos zurück auf ihre langen und ereignisreichen Karrieren und können auch dank ihrer seit der Kindheit bestehenden Freundschaft viele interessante und amüsante Episoden erzählen - inklusive der schwierigen Zeiten in Davos.

Nach über einen Monat Pause sitzen wir endlich wieder in der Stammformation zusammen und merken: Wir bekommen schon langsam wieder Lust auf das Münchner Eishockey. Also der ein oder andere. Ein Grund dafür sind die weiteren Veränderungen im Kader des EHC Red Bull München, über die wir teilweise dann doch genauer sprechen müssen. Dazu begrüßen wir herzlich die Dresdner Eislöwen in der DEL, die nicht nur mit einer interessanten Mannschaft in die Stadien des Oberhauses kommen, sondern auch dafür sorgen dürften, dass der Kampf um den Klassenerhalt noch intensiver und enger werden wird. Zudem freuen wir uns auch über Podcast-Verstärkung, ein herzliches Servus an "Eislöwen auf Kufen". Außerdem beschäftigt uns die neue U24-Regel der DEL, das Vorbereitungsprogramm des EHC und verkünden stolz das Ergebnis unserer Saisonwette 2024/25, an der die Stammtisch-Gemeinde einen großen Anteil hat.

Die ZSC Lions sind Schweizer Meister. Spiel 5 im Playoffinal endet mit einem 3:2-Erfolg der Zürcher in Lausanne. Das Best-of-7 geht damit mit 4:1 Siegen an den Titelverteidiger. Wir diskutieren mit Rapperswils Goalie Melvin Nyffeler über die Partie und vor allem die Torhüter-Optik.

Spiel 4 im Playoffinal endet mit einem 3:1-Heimsieg der ZSC Lions gegen Lausanne. Damit führen die Zürcher im Best-of-7 mit 3:1. Wir diskutieren mit dem früheren Goalie Lars Weibel über die Partie, aber auch über seine aktuelle Arbeit als Nationalmannschafts-Direktor.

Spiel 3 im Playoffinal zwischen dem Lausanne HC und den ZSC Lions endet mit einem 4:2-Heimsieg. Damit führen die Zürcher im Best-of-7 nur  noch 2:1. Wir diskutieren mit Michael Liniger, dem neuen Cheftrainer des EV Zug, über die Partie, aber auch über seine Arbeit beim EVZ. 

Auch Spiel 2 im Playoff-Final geht an die ZSC Lions: Sie gewinnen zuhause gegen Lausanne mit 3:2 nach Verlängerung und führen im Best-of-7 nun 2:0. Über die Partie sprechen wir mit dem früheren Profi Sven Helfenstein, der heute als Spielerberater arbeitet und bei Mysports als TV-Experte wirkt.

Spiel 1 im Playoff-Final geht an die ZSC Lions, die auswärts bei Lausanne mit 3:0 gewannen. Wir diskutieren mit Edgar Salis über die Partie sowie die Lions-Organisation.

Am siebten und letzten Tag der Playoff-Halbfinals gewinnt der Lausanne HC gegen den HC Fribourg-Gottéron Game 7 mit 5:1. Der LHC trifft damit ab Dienstag im Final auf die ZSC Lions, die sich bereits am Donnerstag gegen den HC Davos durchgesetzt hatten. Wir reden mit Stürmer Dominic Hobi über die gestrige Partie sowie über die ebenfalls bereits beendete Ligaqualifikation, in der sich der HC Ajoie gegen Swiss-League-Club Visp 4:1 durchsetzte und sich den Ligaerhalt sicherte.

Am sechsten Tag der Playoff-Halbfinals verlor der HC Fribourg-Gottéron gegen Lausanne 1:4 und unterlag der HC Davos den ZSC Lions 4:6. Damit gewannen die Zürcher ihre Best-of-7-Serie 4:2, während es im Duell der Westschweizer 3:3 steht. Wir reden mit dem früheren Schiedsrichter und heutigem Mysports-Referee-Experten Nadir Mandioni über die beiden Spiele sowie über die Sicht der Unparteiischen.

Am fünften Tag der Playoff-Halbfinals gewann der Lausanne HC gegen den HC Fribourg-Gottéron mit 2:1 und siegten die ZSC Lions gegen den HC Davos 3:0. Im Best-of-7 liegen Gottéron und die Zürcher beide 3:2 vorne. Wir reden mit dem CEO der ZSC Lions sowohl über die Partie seiner Mannschaft, sprechen aber auch über das Duell in der Westschweiz.

Am vierten Tag der Playoff-Halbfinals gewinnt der HC Fribourg-Gottéron gegen Lausanne mit 4:3 nach zwei Verlängerungen und siegt der HC Davos gegen die ZSC Lions 3:1. Während Gottéron im Best-of-7 3:1 führt, steht es in der anderen Serie 2:2. Wir reden mit Österreichs Nationaltrainer, dem Schweizer Roger Bader, über die beiden Spiele, aber auch über die Austria-Spieler Vinzenz Rohrer und Michael Raffl im Schweizer Playoff.

Am dritten Tag der Playoff-Halbfinals verliert der Lausanne HC gegen den HC Fribourg-Gottéron mit 2:3 nach Verlängerung und gewinnen die ZSC Lions gegen den HC Davos 5:1. Gottéron und die Zürcher liegen nun im Best-of-7 beide 2:1 vorne. Wir reden mit dem aktuell verletzten Davoser Nationalspieler Enzo Corvi über die Partie seiner Mannschaft, sprechen aber auch über das Duell in der Westschweiz.

Am zweiten Tag der Playoff-Halbfinals verliert der HC Fribourg-Gottéron gegen den Lausanne HC mit 0:1 und gewinnt der HC Davos gegen die ZSC Lions 4:3. In beiden Serien steht es nun 1:1. Wir reden mit Langnaus Sportchef Pascal Müller über die starke Saison seines Teams sowie auch ausführlich über die beiden Playoff-Duelle.

Am ersten Tag der Playoff-Halbfinals verlor der Lausanne HC gegen den HC Fribourg-Gottéron mit 2:3 und gewannen die ZSC Lions gegen den HC Davos 6:1. Wir reden mit ZSC-Assistenztrainer Fabio Schwarz über das Spiel seiner Mannschaft, reden aber auch über das Duell in der Westschweiz.

Die Viertelfinals endeten am 14. Tag mit dem 4:1-Sieg von Fribourg-Gottéron in Bern und dem Endstand von 4:3 in der Best-of-7-Serie. Damit kommt es ab Samstag zu folgenden Halbfinals: Lausanne - Fribourg und ZSC - Davos.In der 14. Episode des Playoff-Eisbrechers blicken die vier Hosts zurück und erzählen von zwei Momenten, die ihnen in den letzten zwei Wochen besonders in Erinnerung geblieben sind.

Am 13. Tag der Playoff-Viertelfinals 2025 gewann der Lausanne HC gegen die SCL Tigers Spiel 7 mit 6:2 und damit mit 4:3 die Serie. Wir blicken auf Spiel 7 zurück und sprechen auch über den bereits im Play-In ausgeschiedenen HC Ambri-Piotta. Gast ist nämlich HCAP-Trainer Luca Cereda.

Am zwölften Tag der Playoff-Viertelfinals 2025 gewann Bern in Fribourg 4:3 nach Verlängerung und glich die Serie zum 3:3 aus. In der heutigen Playoff-Daily-Folge schaltet sich Félicien Du Bois die Diskussion ein. Wir sprechen mit dem früheren Nationalverteidiger und heutigem Juniorentrainer beim HC Davos über Spiel 6 bei Gottéron - SCB. Und auch über "seinen" HCD, der sich in seiner Serie gegen den EVZ mit 4:0 durchsetzte.

Am elften Tag der Playoff-Viertelfinals 2025 gewannen die SCL Tigers gegen Lausanne 3:2 und glichen die Serie zum 3:3 aus. Wir blicken aber auch auf das Playoff des EHC Kloten zurück, der im Derby gegen die ZSC Lions mit 1:4 Siegen den Kürzeren zog. Gast ist nämlich EHC-Sportchef Ricardo Schödler.

Am zehnten Tag der Playoff-Viertelfinals 2025 gewinnt Bern gegen Fribourg 3:2 nach Verlängerung und verkürzt die Serie auf 2:3. In der heutigen Playoff-Daily-Folge schaltet sich Christian Wohlwend in die Diskussion ein. Wir sprechen einerseits über SCB - Gottéron. Und weil die Serie EVZ - HCD (0:4) bereits seit 2 Tagen beendet ist, thematisieren wir auch das Playout Lugano - Ajoie und den Swiss-League-Final Basel - Visp.

Am neunten Tag der Playoff-Viertelfinals 2025 gewannen die ZSC Lions gegen Kloten 5:2 und beendeten die Serie mit einem 4:1. Bei Lausanne gegen die SCL Tigers gab es mit 4:1 den fünften Heimsieg, der LHC führt damit 3:2. In der Playoff-Daily-Folge schaltet sich MySports-Moderator Jann Billeter in die Diskussion ein.

Am achten Tag der Playoff-Viertelfinals 2025 verlor der SC Bern bei HC Fribourg-Gottéron 1:2 und liegt nun im Best-of-7 1:3 zurück, während der HC Davos gegen den EV Zug 5:2 siegte und die Serie mit 4:0 gewann. In der heutigen Playoff-Daily-Folge schaltet sich die Schweizer Goalie-Legende Renato Tosio in die Diskussion ein. Wir sprechen über Davos - Zug und Fribourg - Bern. Bei der einen Partie war Tosio am Donnerstag im Stadion, aber auch über die andere wird ausführlich diskutiert.

Am siebten Tag der Playoff-Viertelfinals 2025 gewann der EHC Kloten gegen die ZSC Lions 2:1, während die SCL Tigers gegen Lausanne 3:2 siegten. In den Serien steht es 3:1 für den ZSC respektive 2:2. In der Playoff-Daily-Folge schaltet sich MySports-Experte Ueli Schwarz in die Diskussion ein.

Am sechsten Tag der Playoff-Viertelfinals 2025 gewann der SC Bern gegen den HC Fribourg-Gottéron 3:2 nach Verlängerung, während der EV Zug dem HC Davos gleich 0:4 unterlag. In den Serien steht es 2:1 für Gottéron respektive 3:0 für Davos. In der heutigen Playoff-Daily-Folge schaltet sich EVZ-Sportchef Reto Kläy trotz schwieriger Ausgangslage in die Diskussion ein. Hauptthema ist das Duell Zug - Davos mit dem Trainerduell Josh Holden - Dan Tangnes, daneben wird aber auch über die Serie SCB - Gottéron geredet.

Am fünften Tag der Playoff-Viertelfinals 2025 gewannen die ZSC Lions gegen 1:0 und führen nun im Best-of-7 3:0. Qualifikationssieger Lausanne besiegte die SCL Tigers mit viel Mühe 4:2 und führt nun 2:1. In der Playoff-Daily-Folge schaltet sich Jeff Tomlinson in die Diskussion ein. Er beendete 2023 seine Trainerkarriere in Kloten wegen gesundheitlichen Problemen, von denen er auch an dieser Stelle in einer früheren Episode erzählte. Tomlinson, immer noch als Berater des EHC Kloten tätig, ist damit der erste Gast im Eisbrecher, der in zweites Mal dabei ist. Wir sprechen mit ihm über das Zürcher Derby und das umstrittene Tor. Doch auch die Serie LHC - Langnau ist Thema in der Runde.

Am vierten Tag der Playoff-Viertelfinals 2025 bezwang der HC Fribourg-Gottéron den SC Bern 3:0, während der HC Davos gegen den EV Zug 5:1 gewann. In beiden Serien steht es damit 2:0. In der heutigen Playoff-Daily-Folge schaltet sich der frühere Stürmer und heutige SCB-Sportchef Patrik Bärtschi in die Diskussion ein. Hauptthema ist das Zähringer Derby Bern - Gottéron. Daneben wird aber auch über die Serie HCD - EVZ geredet.

Am dritten Tag der Playoff-Viertelfinals 2025 unterlag der EHC Kloten den ZSC Lions 0:5, während die SCL Tigers gegen Lausanne 4:3 nach Verlängerung gewannen. In der Playoff-Daily-Folge schaltet sich der frühere Verteidiger Justin Krueger in die Diskussion ein. Er beendete seine Karriere in Lausanne und war beim LHC danach noch ein Jahr lang als Assistent im sportlichen Management tätig. Er spielte zudem in der Nationalmannschaft Deutschlands unter Geoff Ward und hat darum aus doppeltem Grund Interessantes zu erzählen über den Lausanner Trainer. Daneben wird aber auch über das Zürcher Derby geredet, bei dem nicht nur das klare Resultat, sondern auch eine Szene mit Steve Kellenberger und Vinzenz Rohrer für Diskussionen sorgte. 

Am zweiten Tag der Playoff-Viertelfinals 2025 verlor der SC Bern gegen Fribourg-Gottéron 3:4 nach Verlängerung, während der EV Zug gegen Davos 1:2 unterlag. In der Playoff-Daily-Folge schaltet sich HCD-CEO Marc Gianola in die Diskussion ein. Wir reden aber auch über das sehr lange Spiel des SCB gegen Gottéron.

Das Playoff 2025 hat begonnen. Am ersten Tag der Viertelfinals gewannen die ZSC Lions gegen Kloten 5:1, während Lausanne die SCL Tigers 4:3 besiegte. In der ersten Playoff-Daily-Folge schaltet sich ZSC-Sportchef Sven Leuenberger in die Diskussion der Eisbrecher-Hosts ein. Wir diskutieren aber auch über das turbulente Spiel Langnaus beim Qualifikationssieger LHC.

Die Playoff-Viertelfinals liefern grossartige Affichen: Mit ZSC - Kloten und Bern - Fribourg gleich zwei Derbys und mit Zug - Davos ein Duell, das aus zwei Gründen besonders ist. Zum einen hat sich zwischen den beiden Teams in den letzten Jahren auch dank hitzigen Playoff-Spielen eine grosse Rivalität entwickelt, zum anderen treffen hier mit Dan Tangnes und Josh Holden zwei Trainer aufeinander, die im EVZ fünf Jahre lang als Headcoach und Assistent gearbeitet hatten und dabei zu den wohl grössten Freunden unter den Trainern der National League wurden.Die vierte Serie bleibt da fast ein wenig im Schatten der anderen Begegnungen. Zu Unrecht? Immerhin liegt beim Duell des Qualifikationssiegers Lausanne und Aussenseiter Langnau, der in der höchsten Liga erst zum dritten Mal Playoff spielen wird, das grösste Überraschungspotenzial.Ebenfalls demnächst beginnt das Playout zwischen Lugano und Ajoie. Der Verlierer muss danach die Ligaqualifikation um Auf- um Abstieg bestreiten - aber nur, wenn der EHC Visp B-Meister wird.

I sit down with Ceno on AITB to dive into his journey in graffiti. We talk about his roots in Texas, where he got his start by hitting every highway he could, leaving his mark one spot at a time. From there, we cover a wide range of topics—his global travels, the thrill of exploring new cities, and even having peach cobbler as a side dish along the way. It's a conversation filled with stories of adventure, creativity, and the experiences that shaped his path in the graffiti world.Myan Social links and Sticker printingCenoWebsite coming soonSend us a textSupport the show

Educational consultant Lynn How joins Izzy to talk all things SENCO paperwork, including EHCP paperwork. The episode splits into two parts - streamlining paperwork and EHCPs. Lynn shines a light on:Using the graduated approach to provide the right provisionThe process of applying for an EHC needs assessmentWho is responsible for carrying out key steps in the EHCP processResourcesLynn's SEND Paperwork Overview (from her webiste Positive Young Minds)Children and Families Act 2014 About LynnLynn is an educational consultant and SENCO with over 20 years of primary and SLT teaching experience. She has recently released Starting Out as a Primary School SENCO, which you can find here.Academy 21This episode is sponsored by Academy21, the UK's leading online, DfE-accredited, alternative provision experts. Working with schools, local authorities and multi-academy trusts, they help students, through live teaching to build confidence, re-engage and progress in their education.Academy21 works in partnership with schools and other institutions to support students who are struggling with attendance for whatever reason, providing a bridge towards reintegration.Find out more about Academy21 by heading to their website, academy21.co.uk , or follow them on the SEND Network!The SEND NetworkFor more information and resources, access the Podcast Discussion Room here: https://send-network.co.uk/rooms/the-send-network-podcastNew to the network? Register here: SEND Network | An online community for SEND professionals (send-network.co.uk)

Spiel eins in der neuen Amtszeit von Don Jackson beim EHC. Nach einer turbulenten Woche und dem gesundheitlichen Rücktritt von Max Kaltenhauser übernimmt der Don. Und das ausgerechnet zum Auswärtsspiel in Berlin. Robin, Helmut und Egl analysieren die Situation und danach den Sieg bei den Eisbären für euch.Viel Spaß bei dieser Overtime!-----------------------Die Pins findet Ihr künftig neben der Nordkurve, zwischen Block 019 und 020. Wann es Pins gibt erfahrt Ihr über unsere Socials!Zur Vorbereitung auf das nächste Spiel hört auch gerne bei den Kollegen von „Puck Ma‘s“ rein:Puck Ma's PodcastIhr wollt uns unterstützen? Kein Problem!Den Link zu PayPal von Radio Oberwiesenfeld findet Ihr da: PayPal Radio OberwiesenfeldWir danken dem EHC Red Bull München für die Möglichkeit, bei der PK dabei zu sein, diese und anschließende Interviews aufzuzeichnen und diese Aufnahmen im Rahmen unseres Podcasts verwenden zu dürfen.Intro und Outro sind von der Band Viper Queen! Lasst gerne ein Follow da!------------------abonniert uns auf folgenden Kanälen:InstagramFacebook

Die Stimmung im Münchner Eishockey-Kosmos kippt – beim Heimdebakel gegen die DEG stellen die Fans den Support ein und einige vergessen in der Folge ihre guten Manieren. Während auf den Rängen die Gemüter aufgehitzt sind, herrschen beim EHC selbst Ratlosigkeit und Durchhalteparolen. Das Auf und Ab geht weiter, sodass man sich mittlerweile um die direkte Playoff-Qualifikation ernsthafte Sorgen machen muss. Die Wut der Anhänger richtet sich dabei allerdings nicht so sehr gegen die Spieler und schon gar nicht gegen Trainer Max Kaltenhauser, sondern gegen etwas abseits des Eises. Ungefiltert legen wir den Finger in die Wunde, finden aber auch Positives auf den Rängen, das uns Hoffnung für die Zukunft macht. Außerdem haben wir neue, kulinarische Ideen für den SAP Garden, bei deren Umsetzung wir helfen würden.

The Genetic Rare Syndromes Observational Cohort (GenROC) study aims to improve our understanding of how rare genetic conditions affect the way children grow, their physical health and their development. Through actively involving parents as experts in their child's condition, the study seeks to gather valuable insights and ensure that family experiences shape future research and care strategies. You can find out more about the study and eligibility criteria via the Bristol University website. In this episode, Jillian Hastings Ward, patient advocate and former Chair of the Participant Panel at Genomics England, is joined by Dr Karen Low, a clinical geneticist leading the study at the University of Bristol, who shares insights into its objectives, the importance of a co-production approach with families, and the vital data being collected in the study to improve support for these children and their families. We'll also hear from Lindsay Randall, a parent who discusses the journey of receiving a rare diagnosis for her child, highlighting the critical need for more comprehensive information and community support. "If you join GenROC, that data will be used to develop a growth chart for your child essentially and their genetic condition, so I'm really excited about it because I feel like that's a very concrete definite given now for all the families in GenROC, which is just brilliant." You can download the transcript or read it below. Jillian: Welcome to Behind the Genes Lindsay: Historically, there's been a significant absence of patient voice in rare disease research and development, and knowing that's changing, I think that's really empowering for families and to know that professionals and industry are actually listening to our stories and unmet needs and really trying to understand, and that offers much greater impact on the care and treatments of patients in the future. Jillian: My name is Jillian Hastings-Ward. On today's episode I'm joined by Dr Karen Low, Consultant Clinical Geneticist and Chief Investigator for the General Cohort Study, and Lindsay Randall, Paediatric Practice Development Nurse and founder of Arthur's Quest, which is a UK registered, non-profit, raising awareness for the ultra-rare condition: SLC6A1, developmental and epileptic encephalopathy. Welcome to you both. Today we'll be discussing the GenROC study, which is aiming to understand more about the health, development and valuing the experiences of children with neurodevelopmental conditions. If you enjoy today's episode we'd love your support. Please like, share, and rate us on wherever you listen to your podcasts. Thank you both very much for joining us today, Karen and Lindsay. There's a lot we want to cover, but first of all it would be great just to put a little bit of context around the Gen-Roc study. Karen, can you tell us a bit about what the study is aiming to do, who is eligible and why do you want them? Karen:  Thank you. And thank you so much for having me today, Jillian. So, the GenROC study, first to just explain to people what ‘GenROC' stands for. GenROC stands for the Genetic Rare Syndromes Observational Cohort Study. Just to give you some context about the study, I'm a clinical geneticist and most of my clinical work focuses on paediatrics, so I see children in my clinics and the sort of children I see generally are children with rare genetic syndromes. The last five to ten years we've got much better at diagnosing children with these rare conditions and that's because testing has got so much better. We can now do whole genome sequencing and we can do that on the NHS, which is amazing, children can get their tests as part of their clinical care, so it means that a lot more children are being diagnosed with rare conditions, about 2,000 per year in the UK. And the thing about that is, that I see these children in my clinics and I give their families that diagnosis. But the problem is for so many of these ultra-rare conditions, like Lindsay's family has, we sit there and we say to the family, “Well, your child has got ‘X' condition,” and we give them some information from maybe one or two publications and linked to a leaflet and a Facebook group. And then we say, “But really we don't know that much about this condition.” And they say, “But what is it going to mean for them when they are growing up or when they are adults? Will they be able to finish school? Will they be able to work? What is it going to mean?” And I have to shrug my shoulders and go, “I'm not really sure.” And as a geneticist and as a doctor and as a mother really, I just felt that wasn't good enough, and I found it really frustrating and I know that the families that I work with, that I look after, also find it frustrating and I wanted to do better. And I also found it frustrating that for many genes, researchers would publish two or maybe three publications about these conditions, and then they would move on to the next novel gene, and actually, the journals are a bit like that as well, they like novel things, they like new conditions, they like the next gene. And so, it means that actually data doesn't always carry on being gathered in these rare conditions, and there are a lot of them. That was another thing, I sort of felt that these conditions were being done a disservice and that we needed to do better, so that's where the whole idea of the GenROC study came from was my drive and desire to improve things for families and actually to work with families to improve that, and that's where so this is a very highly co-produced study and right from the outset I've involved parents in telling me what they wanted to know and I've got a very, very active PPI group, full of parents of children who have got rare genetic conditions, and also I'm really lucky to have a young adult who has a genetic neurodevelopmental disorder herself and they all tell me about essentially what I should do and what I shouldn't do. They tell me when I'm not doing enough or when I need to do something differently, so it's very highly co-produced, they're highly involved all along the way. So, children with a confirmed genetic diagnosis in a list of eligible genes which people can see on our website if they Google GenROC University of Bristol, we've got a very easy checker for eligible genes, but they are essentially the most frequently diagnosed genes in rare neurodevelopmental disorders. And if their child is under 16, has a confirmed diagnosis and doesn't have any other genetic diagnoses then they can go into the GenROC study, that's essentially the eligibility criteria. Jillian: That's really interesting. It's very helpful to hear the background and I think as a parent of a child with a very rare disorder hearing that the clinicians also recognise this gap and the sort of pause that happens once you have your initial diagnosis, is really helpful and really encouraging. Lindsay, can we turn to you next and can you unpack a little bit about what it meant for you to get a rare diagnosis for your child and what point on your family journey was that compared to where you are now? Lindsay: I think to get a rare diagnosis for us was difficult and challenging and I think the first kind of challenge that any family has is actually being well-informed by a paediatrician who is also well-informed, and that's not always the case. That can affect the way we acknowledge or accept a diagnosis and how we also access support and how we understand what more we can do to make more connections. We did have genetic counselling offered, but I think there are families out there who don't get genetic counselling offered to help them understand the child's diagnosis, and then there's a heavy reliance on the internet, and as you said, there's a lack of information out of there. A lot of conditions are newly diagnosed or they're very complicated genes to work with, or as Karen said, they've had a couple of papers and people have moved on. And I think that does cause an immense feeling of isolation. We were diagnosed in 2018, our son, our first child, and exactly as Karen said, it was a fairly quick appointment of, “We don't really know much about this condition at the moment, there's a couple of papers. We know of 34 children in the world at the moment with your condition. Here's a Facebook group,” which we did join. And it is overwhelming to be given a diagnosis that's delivered with such little hope I guess, finding sources of information that's valid and robust is challenging, not everyone knows how to do that or has a skillset to conduct searches of academic research and I think that clinicians could definitely do better in also signposting the kind of umbrella charities like Unique and Contact and Swan and patient organisations, because I know that would have been definitely helpful for us as a family to be able to have opportunities to connect with others. Jillian: Thank you. Our diagnostic journey has been a bit a similar in that we were diagnosed through the NHS, and that at the time my son was the first person diagnosed with his disorder in the whole of the UK so it was really a big question mark, it was a question of our geneticist saying, “Here's the three PDF articles that we know exist in the world about this condition. Can you read them and tell us whether you think that sounds like him in order for us to be confirming our diagnosis?” I very much hear what you're saying there about feeling lost in the wilderness. And we too joined a Facebook group quite shortly after we got our diagnosis, and at the time my son was among the older ones or certainly as time has gone by he has been among the older children, so it can be really hard to know what might happen next. I think that now as Karen was saying we're getting much better at diagnosing people thanks to all the extra testing that's happening, that happens much earlier in life than it has done in the past, but I think then it still leaves a gap in parents' understanding because you don't necessarily know what the next ten years might look like for example. And so, I think making connections with people who are in that age bracket can be really important, but it's very hard to do. So Lindsay, I'm conscious that your professional training as a nurse must have stood you in quite good stead when you were faced with a barrage of medical literature shortly after your diagnosis, but I think one thing that every parent shares is the desire to do the best for their child and especially in this world of rare disorders. There's a huge amount of energy that comes through the community I think, faced with the need to try and self-start and build these networks and connections for themselves. Is that something that you've seen in your community as your experience? Lindsay: Yes, definitely. I think we're a growing community and over the years of course more and more children and young adults have been diagnosed with a few older adults coming through. It is very much a global networking effort and parent/patient organisations have been set up in many countries now by parents of children with children with SLC6A1. I definitely think that drive to become an expert in your child's condition is a long journey and one of continual learning and actually a lot of families simply don't have a capacity to take that on, I think often the medical and scientific jargon is difficult to understand and that makes it challenging to access. And as you said, as a paediatric nurse, I at least have some existing skills to understand healthcare to read the research and speak with medical and scientific professionals with some confidence, but in some ways, that has increased the burden I've placed on myself to become an expert for my children and other children and families who are not in the same position as me. It does require a lot of dedication and time, and that does have implications on families because it's time away from our children and from home, and from the remnants of our lives that we desperately try to cling onto, to not lose all sense of ourselves. It's not often spoken about but I do see the strain it places on the families, as well where there's a lot of separation and divorce sadly in the rare disease communities, and often that's as a result of one parent's drive to be the expert, which seems to cause one parent to fulfil more burden of care and that fosters some level of resentment or sense of loneliness towards the other one. Jillian: There are some scary statistics out there around familial breakdown in this context, and it is something which there are so many factors at play, but it definitely seems to be quite widely recognised and definitely a problem. In terms of the time that people have to spend on liaisons with the research community and the clinical community, that could bring us quite nicely back into a question for you, Karen, about what kind of information the GenROC study is looking to collect from families, can you tell us a bit more about that, please? Karen: Yes, absolutely. As I said before, I've been very conscious of the sort of lives that our families are living, and listening to Lindsay, her story is very reminiscent of so many others and yours, Jillian. So I know families have about a gazillion hospital appointments, their children are often also very, very ill intermittently or a lot of the time, then they've got school stuff to deal with or they've got EHC plans to try and fight for. It's more than a fulltime job in itself just being a parent of a child with a rare disease and it's hard work, so me asking them to do anything else is asking a lot. Luckily, I find, with the families I work with, who are universally wonderful I should add, that they are actually just really enthusiastic anyway about research for their child's condition, and that's because there isn't enough information out there, so it's relevant and important to them. But because they have no time at all, and any time they do give is their own personal time when they could be finally putting their feet up and watching something on TV, I have to make it as low effort as possible. The questionnaire is all online, using a user-friendly and interface as we've been able to develop. It's very user-friendly, it takes 10-15 minutes to complete; they can come and go from the questionnaire as well. We only ask for one time point at the beginning, which is all the sort of stuff that most parents will be able to tell you off the top of their head as well, so they don't have to go looking for loads of information, apart from a height and a weight. Then later down the line we're going to ask for a second questionnaire, it's in the process of being finalised and again that will be the same amount of time, very easy to do, online, at their convenience. It was co-produced with the PPI group, they've tested it for me, I've had really good feedback and I've asked parents who are in the study as well for feedback. Everyone tells me it's not too difficult or burdensome for them to do. The secondary questionnaire has been very much informed by conversations with the parents that I had as part of a nest of qualitative interview study in GenROC, and that has driven that secondary questionnaire quite differently to what I thought it might be when we first set up the GenROC study. At the beginning I thought it might just be: have things changed for your child? Can you give us a bit more clinical data? But actually I realised that probably I will still gather that information, but they probably won't have changed that much within the timespan in the study because it will only be a year or two after they completed the first questionnaire, and actually I realised that it would be much more useful to look at the impact of the genetic diagnosis, look at how they're accessing services within the NHS, what sorts of services they are accessing, Impact on the family and also looking at priorities for families. So families have talked to me about what their priorities are in rare disease, both in service provision but also in research, and I really am a very strong believer that we need to be given the limited funding, we need to be doing the research that matters the most to the families, not to the researchers. What do families actually want us to look into? Actually, do they want us to be looking into behaviour and what strategies work best for example, rather than something else very medical – what matters the most? And so that's going to be a specific question in that secondary questionnaire, really trying to identify what matters to families the most and then how that can be translated into clinical research in the future. So I'm really interested to see what's going to come out of that. Lindsay: I think that sounds brilliant, Karen because I think historically there's been a significant kind of absence of patient voice in rare disease research and development, and knowing that that's changing, I think that's really empowering for families and to know that professionals and industry are actually listening to our stories and unmet needs, and really trying to understand, and that offers a much greater impact on the care and treatments for patients in the future and certainly it makes endpoints more relevant to families as well. Jillian: What kind of outputs are you going to be looking at? Karen: The height and weight, the reason I'm asking for that is really because we are trying to work on growth charts for children and that's because growth charts for children with rare conditions don't exist by enlarge, there are a very, very tiny number of rare syndromes or conditions that have their own growth chart. The problem is that most children with these sort of rare conditions that we're talking about are either quite small or quite big, and the problem is that the paediatricians look at their growth and they go, “Oh well, you're much bigger or much smaller than other children your own age, what shall we do about that?” and particularly the little tiny ones it causes lots and lots of concern, so quite often these sort of growth parameters mean that the paediatricians do lots and lots of tests or put feeding tubes down, or add lots of calories, so it can be quite invasive and interventional actually that sort of growth parameter. But actually, sometimes that's because of the genetic condition and no matter how much feeding you do it's not going to change anything. The difficulty is we don't know that for certain, and actually we need good growth charts where paediatricians can make that call, and conversely sometimes a child actually does need investigating and the paediatrician puts it all down to their genetic condition, and that's why we need these growth charts. So GenROC is aiming to gather growth data from all these children and then we're going to work closely with Decipher, which is a website that was developed through the DDD study, which already holds lots of data from that study, so we're building on the power of that study and we're going to be generating growth charts for all of these genes. We've developed a new method for producing growth charts for rare conditions where you've got small numbers of patients – that was never possible before, so we've already proven now for four conditions we can, so the next stage is using all the GenROC data, putting it into Decipher and coding it in. So, if you join GenROC, that data will be used to develop a growth chart for your child essentially and their genetic condition, so I'm really excited about it because I feel like that's a very concrete definite given now for all the families in GenROC, which is just brilliant. Jillian: And is that something which will be shared with the families individually? Karen: Really great question. I hadn't planned on sharing the growth charts individually with the families, but that's something I can also go back to my PPI group and discuss with them about whether that's something people would want, and also I have a newsletter which goes out every three months to the families, so I can certainly ask that question actually directly. It's going to be widely available, the growth charts, we're going to make sure that they're accessible to paediatricians and clinicians etc. but in terms of output to the study, definitely the growth charts, we're also hoping to have other clinically useful outcomes depending on the different genes that come into the study. We essentially have a cohort of children with rare conditions, everyone puts everything down to a specific genetic condition but we know that there must be other factors at play that influence how children do. And this is a really unique thing we're trying to do with GenROC actually, looking at aside from that genetic variant, that alteration, what other factors are influencing how children are doing? Because some of those might be modifiable, you know, or some of them there could be things that could be put in place to help improve outcomes. So I'm quite excited about that as well, because that's quite new and novel and not really been thought about in this context before, so that will be an output. And the other output is something that I'm working on with Unique, which is the rare disease charity who has worked with us on GenROC from the start, and they are involved in our PPI as well and that is going to be looking at a template, calling it a report at the moment, it's in very early days, but something that parents will be able to hold, it's going to have lots of drop-down boxes that can be tailored and modified for individual patients and children, which will be a bit of a guide that they can give to clinicians, professionals, education, telling them about their condition but also telling them on an individualised basis about what needs to be looked for in the future. Because parents tell me they are fed up of having to tell everybody about their child's condition constantly, all the time, over and over again. So what the point of this output would be is to try and ease that burden a little bit. This is very early stages but we're going to involved parents all along the way. Jillian: And is that something which builds on the hospital passport idea that we've seen emerging around the world over the last few years where parents can start off telling their child's story on their own behalf? Karen: So, it's come from my own lived personal experience of being a mother of a child with autism and I haven't really spoken about that publicly before, so it's something I'm saying for the first time. I have a child who has autism and I have had to navigate things like a DLA application form. Jillian: That's Disability Living Allowance. Karen: Yes, exactly, which is a horrendous form, it's the most horrible form to complete, probably apart from an EHCP plan form but it's a horrible form to complete, it's quite upsetting as a parent and it's also got millions of boxes that you have to fill in. But one of the things that really, really helped me when I was completing that was a charity who had come up with lots of drop-downs that you could select from that might be applicable to your child to help you complete this form. And so it made me really think, “Well, could we do something similar for our children with genetic conditions but come up with lots of dropdown options that might apply to their child in all sorts of different areas?” And that was the inspiration, it was that, and doing the qualitative study that I've already done with parents of children in GenROC who were telling me about how fed up they were of having to constantly tell everybody about their child's condition over and over again. Jillian: Yes, that's probably very helpful to empower families to use standard terminology across the different families because my own son has epilepsy as part of his condition but actually trying to describe what his seizures look like I'm not sure I'm using the right words to fit the right boxes to fit them into the right categories with the neurologist. So that level of standardisation is something that we definitely need embedded into the system in order for more people to be able to use this data more effectively, so that sounds very helpful. Lindsay, coming back to you, what are you hoping to get out of this study, or what are you hoping this study will do on your behalf for the world? What motivated you to take part? Lindsay: I think I would like to see all of the aims of the study realised and for the study data to be used to inform the development of standards of care for a wide range of conditions, those included in the study. I think it would be great if that information, as Karen said, is available not only to the participants but also to children diagnosed with those conditions in the future and also it's an opportunity to consider themes that are identified across the disease groups as that can also help inform future research and look at investigations into the mechanisms of disease and where actually therapeutics could treat maybe more than one disease at a time and increase potential for basket trials and early access programmes – thank you to Dr Karen Low and her team for conducting the project because it included a comprehensive list of rare diseases, it really does give parents and patients an opportunity to have a voice and to contribute, which is empowering, and it gives them a little bit of autonomy as well over their direction that science and research goes to. Jillian: Fantastic, thank you. Karen, can you tell us a little bit about the timeframe for the study? I realise that we haven't really touched on that so far. Karen: Yes absolutely, I'm aiming to recruit 500 children as a total. We're open at 22 sites across the UK. Coinciding with this podcast actually we've opened a second door for recruitment, so the way we've recruited so far has been through clinical genetic sites, which is the way we've done these sorts of studies in the past, like the DDD study. The problem is that that relies on clinicians identifying eligible patients and clinicians are very, very busy in the NHS. I have worked closely with Unique who have been doing a lot of publicity and the genetic alliance have done publicity as well for the study, so that's been one way of identifying eligible participants. And also just parent power through social media has been amazing. The second way we're going to recruit, and this is going to happen very soon, is through Genomics England. So, we are going to trial a completely novel way of recruiting to research through Genomics England and that is for Genomics England to identify eligible participants for GenROC and this would have been through the 100,000 genome study and then they're going to send them invite letters, inviting them to take part. So that's the next phase of recruitment, I think if we have more than 500 then that will be great too, we'll be able to include those comers too, so that's not a problem. But we don't know whether this will work or not in terms of a way of recruiting to research, this is completely new for Genomics England and I'm a bit of a guinea pig if you like through the GenROC study, but I was quite willing to be that guinea pig because I thought it might increase access. So there will be some parents who have not been told about GenROC who have not heard about it, and who would love to take part, so I feel like this is the way of really widening that net as wide as possible. Jillian: I think that is a challenge isn't it, especially in rare disease – there's no point doing a public broadcast about an initiative because you're going to hit so few of the people that you're interested in, so actually how you access the community is the first challenge and I'm really pleased that Genomics England will be able to help you there because I think that is a very useful route through. I think it will probably be quite reassuring to quite a lot of families who were on the 100,000 Genomes Project who have got a diagnosis of one of the conditions that you're interested in, and are now perhaps subsequently in the fallow period after you have a diagnosis, wondering what happens next, so I can imagine it might be quite good news for some of them at least that they are now being invited to do something further. And the reason that you're building forward and you don't want people who are currently in the deciphering developmental disorders study is because you're already using their data through another source, is that correct? Karen: Exactly. So absolutely, I don't want anyone to feel that I don't want them, that's really not the case. I do want them but we have their data already from Decipher, so we're building on the DDD data already, so they're already contributing which is just the beauty of it, because that's what we should be doing in rare disease, we should be building on previous research because you know, you don't want to be trying to reinvent the wheel. Jillian: Agreed. So if someone is listening to this and has a child with a rare developmental disorder and they are interested in finding out more, what are the steps they need to take? Karen: If they Google Bristol University, GenROC, they'll come straight to the webpage and everything is on there. There's a link that they can sign up, the patient information leaflet's there, the eligible gene list is there, all the information they need, including our email address. Jillian: And is there an upper age limit for recruitment? Karen: Yes, children have to be under 16 and that's because once they get to 16 many of these conditions have associated learning difficulties, and it's just very much more complex to try and recruit young adults, young people, with learning difficulties and given it was a cohort study we felt it was going to be too difficult at the moment. Saying that, I have a huge interest actually in how these conditions present in adulthood, and I'm actually conducting a much smaller study at the moment in KBG syndrome, looking at adults, and so I hope that my future research career will allow me both to follow-up the children in GenROC, so that would be my vision but also to be able to take this forward for other adults with rare conditions, that's my aim and goal in the medium to long-term, so watch this space for that. Jillian: That sounds very exciting, thank you. Lindsay: I think I would like to say to Karen that I really like the sound of the idea of following patients up into young adulthood and adulthood, as you said, that is definitely a kind of an unknown area in lots of the rare diseases, especially in our condition, SLC6A1, it was mutation and the disease was only really discovered in 2015, so it is fairly new and we have very, very few young people and adults coming through and being diagnosed and connecting with the rest of the community. So, being able to understand the trajectory of conditions better and especially conditions where actually the presentation it's quite a spectrum, and so the long-term outcomes for people with SLC6A1 can look quite different, so it's good to collate more information about that I think. Karen: I think it's really important, so that's definitely where I'm looking to for the future with GenROC and more widely, I think it's just something I'm really interested in and has huge relevance for parents and families. Jillian: Well, I think we need to wrap up there but thank you both very much Dr Karen Low and Lindsay Randall for joining me today as we've been discussing the GenROC study, and how the study aims to improve understanding of how rare genetic syndromes affect the way children grow, their physical health, their development, but also how the patient and parent communities can work more closely with researchers to end up delivering something which is of a huge benefit to everybody. If you would like to hear more about this, please subscribe to ‘Behind the Genes' on your favourite podcast app. Thank you for listening. I've been your host, Jillian Hastings Ward. This podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.

Ein Spiel, bei dem man nicht viel meckern kann. Trotzdem verliert der EHC gegen Bremerhaven nach Penaltyschießen. Egl und Robin fassen das Spiel zusammen und danach hört ihr ein Interview mit Rekordmann Maxi Kastner. Eine Pressekonferenz gibt es diesmal leider nicht, die könnt ihr aber beim YouTube Kanal des EHC finden. PressekonferenzViel Spaß bei dieser Overtime!-----------------------Die Pins findet Ihr künftig neben der Nordkurve, zwischen Block 019 und 020. Wann es Pins gibt erfahrt Ihr über unsere Socials!Zur Vorbereitung auf das nächste Spiel hört auch gerne bei den Kollegen von „Puck Ma‘s“ rein:Puck Ma's PodcastIhr wollt uns unterstützen? Kein Problem!Den Link zu PayPal von Radio Oberwiesenfeld findet Ihr da: PayPal Radio OberwiesenfeldWir danken dem EHC Red Bull München für die Möglichkeit, bei der PK dabei zu sein, diese und anschließende Interviews aufzuzeichnen und diese Aufnahmen im Rahmen unseres Podcasts verwenden zu dürfen.Intro und Outro sind von der Band Viper Queen! Lasst gerne ein Follow da!------------------abonniert uns auf folgenden Kanälen:InstagramFacebook

Chiefs OC is in talks to be a HC again possibly. Would you like to see him as th eHC here after Reid hangs it up?

In this episode of our Special Educational Needs and Disabilities (SEND) Podcast, Georgina Durrant was delighted to be joined by Dr Gavin Morgan, chair of the Division of Educational and Child Psychology at the British Psychological Society.Georgina and Gavin discuss a whole range of topics, including:The role of an Educational Psychologist (EP) and when teachers might need them.When EPs are needed for EHC needs assessmentsThe impact of a shortage of EPsWorkload of EPsHow schools can work effectively with EPs.Find all of Twinkl's inclusion resources here: https://www.twinkl.co.uk/l/1a5ag2Find out how to apply for EHC needs assessment as a SENDCO here : https://www.twinkl.co.uk/l/15d5zeLearn and understand what is involved in the EHC Plan review process here https://www.twinkl.co.uk/l/xchp3Learn more about the role of an educational psychologist here https://www.twinkl.co.uk/l/1c4mxi

Ein gutes neues Jahr 2025, liebe Stammtisch-Gemeinde, hoffentlich seid ihr gut rübergerutscht! Wir sind es und haben uns tatsächlich in voller Besetzung zusammengefunden – im Lokal "Land in Sonne 1" am Münchner Westpark, das am 07.02.2025 zum Schauplatz von etwas Historischem im Münchner Eishockey-Kosmos wird, bei dem ihr dabei sein könnt. Mehr dazu in dieser Folge und an team@puckmas.de. Ansonsten besprechen wir die Achterbahnfahrt des Eishockeyclubs, aus der nun wahrlich keiner mehr schlau wird, welche Eindrücke wir haben und was die Verletzungsmisere auf der Center-Position damit (nicht) zu tun hat. Lobend erwähnen müssen wir aber Yasin Ehliz, den neuen DEL-Rekord-Scorer des EHC, und die absolut gelungene Retirement-Zeremonie für den ewigen Capitano Michael Wolf. Viel Spaß!

Die Hälfte der DEL-Hauptrunde ist gespielt, deswegen ziehen wir Münchner Halbzeit-Bilanz. Wo steht der EHC Red Bull München, sportlich wie emotional? Was macht Hoffnung, was liegt im Magen? Wie hat sich der Umzug in den SAP Garden ausgewirkt? Wo sind Gewinner, wo Verlierer zu finden? Natürlich blicken wir auch auf den Status Quo des EHC und der DEL sowie voraus auf die Banner-Zeremonie für Michael Wolf und damit einhergehenden Sperrung der Rückennummer 13. Beim Gedanken an die nachzuholende Zeremonie für die 29 sehen wir auch bei zwei weitere aktuelle Akteure auf Rekordkurs. Außerdem könnt ihr pünktlich zu Weihnachten etwas gewinnen, denn Christoph Fetzer von "bissl Hockey" hat uns da was zukommen lassen – was in Eurer Mail an team@puckmas.de drin stehen muss, erfahrt ihr in dieser Folge. Teilnahmeschluss ist Sonntag, der 22.12.2024 um 12 Uhr.

Punkte in Iserlohn! Stu analysiert das Spiel für Euch, Ihr hört auch die Pressekonferenz.Tore durch: Adam Brooks, Yasin Ehliz und Jonathan BluhmViel Spaß bei dieser Overtime!Verenas Artikel zur Trennung von Toni Söderholm:Nun kam es für viele schneller als erwartet - der EHC trennt sich von Toni Söderholm-----------------------Die Pins findet Ihr künftig neben der Nordkurve, zwischen Block 019 und 020. Wann es Pins gibt erfahrt Ihr über unsere Socials!Zur Vorbereitung auf das nächste Spiel hört auch gerne bei den Kollegen von „Puck Ma‘s“ rein:Puck Ma's PodcastIhr wollt uns unterstützen? Kein Problem!Den Link zu PayPal von Radio Oberwiesenfeld findet Ihr da: PayPal Radio OberwiesenfeldWir danken dem EHC Red Bull München für die Möglichkeit, bei der PK dabei zu sein, diese und anschließende Interviews aufzuzeichnen und diese Aufnahmen im Rahmen unseres Podcasts verwenden zu dürfen.Intro und Outro sind von der Band Viper Queen! Lasst gerne ein Follow da!------------------abonniert uns auf folgenden Kanälen:InstagramFacebook

Wieder eine Niederlage! Sebi analysiert das Spiel für Euch, Ihr hört auch die Pressekonferenz.Viel Spaß bei dieser Overtime!Verenas Artikel zur Trennung von Toni Söderholm:Nun kam es für viele schneller als erwartet - der EHC trennt sich von Toni Söderholm-----------------------Die Pins findet Ihr künftig neben der Nordkurve, zwischen Block 019 und 020. Wann es Pins gibt erfahrt Ihr über unsere Socials!Zur Vorbereitung auf das nächste Spiel hört auch gerne bei den Kollegen von „Puck Ma‘s“ rein:Puck Ma's PodcastIhr wollt uns unterstützen? Kein Problem!Den Link zu PayPal von Radio Oberwiesenfeld findet Ihr da: PayPal Radio OberwiesenfeldWir danken dem EHC Red Bull München für die Möglichkeit, bei der PK dabei zu sein, diese und anschließende Interviews aufzuzeichnen und diese Aufnahmen im Rahmen unseres Podcasts verwenden zu dürfen.Intro und Outro sind von der Band Viper Queen! Lasst gerne ein Follow da!------------------abonniert uns auf folgenden Kanälen:InstagramFacebook

Verdiente Niederlage! Egl und Robin versuchen das Spiel für Euch zusammenzufassen, Ihr hört dazu die PK und ein Interview mit Yasin Ehliz.Viel Spaß bei dieser Overtime!Verenas Artikel zur Trennung von Toni Söderholm:Nun kam es für viele schneller als erwartet - der EHC trennt sich von Toni Söderholm-----------------------Die Pins findet Ihr künftig neben der Nordkurve, zwischen Block 019 und 020. Wann es Pins gibt erfahrt Ihr über unsere Socials!Zur Vorbereitung auf das nächste Spiel hört auch gerne bei den Kollegen von „Puck Ma‘s“ rein:Puck Ma's PodcastIhr wollt uns unterstützen? Kein Problem!Den Link zu PayPal von Radio Oberwiesenfeld findet Ihr da: PayPal Radio OberwiesenfeldWir danken dem EHC Red Bull München für die Möglichkeit, bei der PK dabei zu sein, diese und anschließende Interviews aufzuzeichnen und diese Aufnahmen im Rahmen unseres Podcasts verwenden zu dürfen.Intro und Outro sind von der Band Viper Queen! Lasst gerne ein Follow da!------------------abonniert uns auf folgenden Kanälen:InstagramFacebook