Podcasts about prader willi syndrome

Hello Brave friends! May is Prader-Willi Syndrome Awareness Month and, as you probably know by now, my son Ryan has Prader-Willi Syndrome. He's 21, almost 22, and today we are re-releasing episode number 100 from Season 3, in which I shared the story of how we told Ryan about his diagnosis. And after the story, I have the joy and the privilege of interviewing Ryan, but go grab a Kleenex because, as you will hear, he ends up interviewing me. So thank you for being here and I hope you enjoy listening to this re-release from a few years ago in celebration of Prader-Willi Syndrome Awareness Month.Find full episodes from Season 7 and clips from Season 8 on Youtube here.Find our first book from We Are Brave Together here.Brave Together Parenting is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here. Donate to our Retreats and Respite Scholarships here. Donate to keep this podcast going here. Can't get enough of the Brave Together Podcast? Follow us on Instagram or on Facebook. Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.org If you have any topic requests or if you would like to share a story, leave us a message here. Please leave a review and rating today! We thank you in advance! Disclaimer

New treatments for Prader-Willi Syndrome and hemophilia; FDA fast tracks a chlamydia vaccine candidate; over-the-counter test cleared for identifying chlamydia, gonorrhea and trichomoniasis; semaglutide improves walking ability in patients with peripheral artery disease; and Imfinzi combo therapy approved for MIBC.    

In this conversation, Dr. Kasey Bedard discusses Prader-Willi Syndrome (PWS), focusing on its genetic basis, symptoms, and the importance of early intervention. She emphasizes the significance of dietary management, particularly in addressing hyperphagia, and explores behavioral challenges such as skin picking and emotional regulation. Dr. Bedard highlights the role of parent training programs and community support in managing PWS and the need for collaboration among medical providers. The discussion also touches on residential care strategies and the future of research and treatment for individuals with PWS. Continuing Education Credits (https://www.cbiconsultants.com/shop) BACB: 1.5 Learning IBAO:  1.5 Learning QABA: 1.5 General We also offer certificates of attendance! Follow us! Instagram: https://www.instagram.com/behaviourspeak/ Bluesky: https://bsky.app/profile/benreiman.bsky.social.bsky.social LinkedIn:  https://www.linkedin.com/in/behaviourspeak/ Contact: Dr. Kasey Bedard kasey@pwseducation.org https://www.pwseducation.org/ Links: Prader-Willi Association of America https://www.pwsausa.org/ Jennifer Miller - Pediatric Endocrinologist specializing in hyperphagia https://endo.pediatrics.med.ufl.edu/profile/miller-jennifer-6/ Mike Tan - Pediatric Dietitian https://www.linkedin.com/in/michaeladamtan/ Foundation for Prader Willi Research https://www.fpwr.org/ Articles Referenced: Bedard, K. E., Griffith, A. K., Ulm, D., Strittman, M., Krukowski, K., Eaton, A., Rone, A., & Cardon, T. (2025). Evaluating the Impact of PWS Smart-Start: A Behavior Analytic Caregiver Training Program for Prader-Willi Syndrome. Journal of Positive Behavior Interventions, 27(1), 26-38. https://doi.org/10.1177/10983007231200535 Bedard, K.E., Griffith, A.K. & Krukowski, K. Caregiver-Implemented Behavior Analytic Treatment Package for Skin Picking in PWS: A Pilot Study. Adv Neurodev Disord (2024). https://doi.org/10.1007/s41252-024-00393-2 Bedard, K.E., Pacha, D., Griffith, A.K., & Ward, S. (2024). Prader-Willi Syndrome: A primer for school psychologists, Children and Youth Services Review, Volume 163, https://doi.org/10.1016/j.childyouth.2024.107775 Bedard, K.E., Griffith, A.K., Lister, M.A. et al. Behavioral and Dietary Management for Adults with Prader–Willi Syndrome in a Residential Setting. Adv Neurodev Disord 5, 93–101 (2021). https://doi.org/10.1007/s41252-020-00185-4 Behaviour Speak Podcast Episodes On Other Genetic Syndromes Episode 6 Behavior Analysis and Down Syndrome with Nicole Neil https://www.behaviourspeak.com/e/episode-6-down-syndrome-and-behaviour-analysis-with-dr-nicole-neil-phd-bcba-d/ Episode 27 Val Saini shares some of his research on DiGeorge Syndrome https://www.behaviourspeak.com/e/episode-27-translational-research-digeorge-syndrome-and-a-little-dash-of-metacontingencies-with-valdeep-saini-phd-bcba-d/ Episode 39 Behavior Therapy for Tics and Tourette Syndrome with Douglas Woods https://www.behaviourspeak.com/e/episode-39-behaviour-therapy-for-tics-and-tourette-syndrome-with-douglas-woods-phd/  Episode 137 Behavior Analysis and Fragile X Syndrome with Katerina Monlux https://www.behaviourspeak.com/e/episode-137-fragile-x-syndrome-with-dr-katerina-monlux/    

Joakim Valsinger is an Award-Winning Fitness Instructor and 2nd Generation Pilates Teacher who opened Bälans Pilates Studio in Perth, Scotland in 2005.A Swedish-born Australian, Joakim came to the UK in 1998. He is a former Australian Army Reserve SF Commando, Bondi Beach Surf Life Saver, and Territorial Army Physical Training Instructor. Joakim's son has a rare genetic condition called Prader Willi Syndrome which brings with it several challenges. Pilates has helped Albie improve his physical capacity, and the creativity required to keep Albie engaged and improving has taught Joakim a lot. This unique experience has honed Joakim's skills to achieve tangible results for clients through thoughtful applications of Pilates techniques. Joakim believes Pilates should be accessible, achievable, and assessable. Joakim has presented at Pilates conferences across the UK, Germany, Switzerland, Spain, Brazil, and the USA, as well as several online Conferences with international audiences. Joakim is an Educator for Lolita's Legacy, the Comprehensive Pilates Teacher Training program developed by his mentor. Students travel from around Scotland, the UK, Europe, and even Japan to attend his courses. He is also a regular presenter at Pilates Industry Conferences here and abroad. Before the birth of his son, Joakim was the expert on Pilates for the Military. Since learning to cope with Albie's disabilities, he now teaches other Pilates professionals Pilates for the Disabled Child. In 2023, Joakim was invited to work as a Subject Matter Expert with the US-based National Pilates Certification Program (NPCP) to help create their Certification Exam for Matwork Pilates Teachers.In this episode, we discover the following:What attributes make the best teachers and students?How Pilates has a positive impact on the mind-body connection.The main benefits of Pilates and how they can help someone with a disability.The value of listening with your eyes.With podcast host: Mark SephtonHope you'll enjoy the episode! Hosted on Acast. See acast.com/privacy for more information.

This is the heartbreaking story of Diamond Bynum and her nephew, King Walker, who vanished without a trace in 2015 from Gary, Indiana. Diamond, a young woman with Prader-Willi Syndrome, and two-year-old King disappeared while under the care of their family. Despite extensive searches and numerous leads, their fate remains a mystery. This video delves into the circumstances of their disappearance, the tireless efforts of their family to find them, and the unanswered questions that continue to haunt the community.   If you have any information on Diamond or King, please get in touch with the Gary Police Department at 1–800-CRIME-GP (1–800–274–6347) or the National Center for Missing & Exploited Children at 1–800-THE-LOST (1–800–843–5678)   Watch the Youtube version (Sources in the Description) https://youtu.be/BpBqZpemSPI   Check out my website and submit cases www.danellehallantc.com   Follow my socials! facebook.com/danellehallan Instagram.com/danellehallanyt https://www.tiktok.com/@danellehallan

In this explainer episode, we've asked Meriel McEntagart, Clinical Geneticist in the NHS and Clinical Lead for Rare Disease Technologies at Genomics England, to explain how genetic conditions can be inherited, and other ways they may arise. You can also find a series of short videos explaining some of the common terms you might encounter about genomics on our YouTube channel. If you've got any questions, or have any other topics you'd like us to explain, feel free to contact us on info@genomicsengland.co.uk. To learn more about X-linked inheritance, as mentioned in the episode, tune in to our explainer episode, how does X-linked inheritance work? You can download the transcript or read it below. Florence: Are genetic conditions always inherited from parents? I'm joined by Meriel McEntagart, clinical geneticist for the NHS to find out more. So, Meriel, first things first. How can a genetic change cause a condition?   Meriel: We have about 20,000 genes. That's the estimate and they are the code or blueprint for how to grow and develop a human being. And, if you think about a code, you can have a mistake in a code or a variant in a code. And if that happens, such as one genetic letter being changed for another, the result can be that the code doesn't give the correct instructions about how to grow and develop that human being. There are lots of different ways in which those changes can happen.  Florence: And how can we inherit conditions from our parents?   Meriel: Well, for the most part, like I mentioned, we've got 20,000 pairs of genes and we get one of each pair from our mother and our father. And so, for lots of genetic conditions, they follow a pattern of inheritance where one copy of that pair of genes has got the variant or spelling mistake in it, which causes the condition.  So just having a single mistake in that pair of genes is enough to cause you to develop the symptoms of the condition. Other conditions show where you only develop the condition if both copies of the pair, the one you get from your mother and the one you get from your father have got a variant or a spelling mistake in the gene.  So, you actually don't have a working copy of that gene. There are other patterns of inheritance as well. And so, we talk about X-linked inheritance. That can arise because women have what we call two X chromosomes; men only have one X chromosome.  Florence: If you want to learn more about X-linked Inheritance, you can check out our previous podcast. How does X-linked inheritance work? So then do parents who have a condition always pass it on to their children?  Meriel: So, this is again, where we think about some of those patterns of inheritance that I've just mentioned. If somebody has a condition, for example, a dominant condition, they will have that variant or genetic change that's causing their condition in one of their pair of genes. So then it's 50:50 when they have a child, whether they pass on the gene that's carrying that variant or not, because the child will be getting the other copy of that pair from their partner.  If they do inherit that copy with the variant in it, then they will develop the symptoms of the condition in most cases. In some situations, however, a parent can have a genetic condition. So, they develop symptoms of the condition, and as I've mentioned, it's 50:50, whether it gets passed onto the child, so the child could actually inherit that genetic variant, but potentially not show signs of the condition. And this is what we call ‘reduced penetrance'. This means you can carry a genetic variant and probably some other event has to take place to cause you to develop symptoms.  So that might be that there's other genetic factors that you inherit that trigger you to develop symptoms or there might be an illness or something that you experience that brings out the expression of that gene. So that's quite an important, consideration when we're looking at genetic variants and whether somebody will develop symptoms.  Florence: And finally, how do we develop conditions that don't come from our parents?  Meriel: Well, I suppose the main explanation for that is what we call a de novo genetic event. So that can arise when we are conceived. So for example, genes get copied to be put into the sperm or our genes get copied to be put into the egg. And in that process of making the sperm and the egg, a spelling mistake or mutation can arise in the DNA and then that sperm or that egg, whichever one has it, takes that forward into making the baby. And then the baby from that point will have that genetic variant in every single cell in their body. So it hasn't come from the parents, so it's not inherited but it still is a genetic condition. This is something that now that we're able to do whole genome sequencing, we are finding is a more common explanation for developmental disorders or conditions in children than we previously appreciated. And quite a lot of conditions where the child has congenital abnormalities when they're born, like a congenital heart problem with some global development delay or difficulties or some other sort of problem, when we do their whole genome sequencing, we find that they have a de novo mutation in an important developmental gene.  There are also some more unusual ways in which a genetic condition can arise for the first time in the family. The first example I might give is, the condition, Huntington's disease. Huntington's disease is a neurodegenerative condition that causes a movement disorder, often starting in adult life. And sometimes people will know that it's in their family. However, sometimes it can arise in somebody and there's no history of it in the family at all.  Huntington's disease is what we call a triplet repeat condition. This is where, in our DNA sometimes we have little strings of letters that are repeating after each other. So, usually we'd have 25 repeats or less. This can slip up on transmission from a parent to the child, so it can increase in size and if it slips up into the range of 40 repeats or more, then that person will develop symptoms of the condition.  Another example I thought that might be worth mentioning is what we call imprinting. When we inherit our genes from our parents, for some genes, it actually matters whether the gene copy has come from your mum or from your dad, and it will have an imprint or a mark on it that says, this is the maternal copy, this is the paternal copy.  The reason that imprint is there is that it may potentially switch off that gene and say, this shouldn't be expressed in the baby. And if this doesn't work properly, you can get some conditions like for example, Prader-Willi Syndrome. This is where a child has developmental delay and maybe a very increased appetite. And it's because the differential gene expression hasn't worked. Florence: That was Meriel McEntagart, explaining whether genetic conditions are always inherited. If you would like to hear more explainer episodes like this, you can find them on our website at www.genomicsengland.co.uk. Thank you for listening.

Ruth Perry was told in a ballet class that one day she would be absolutely be glowing wearing feathers and rhinestones on stage.It came true when she danced at the Lido in Paris. Ruth shares her story of her beautiful daughter's condition Prader-Willi Syndrome with its challenges and victories. I was so moved by her fierce mamma love. or more information about Prader-Williams Syndrome, visit pwsa.co.uk www.amazon.com/Bluebells-Forever…ast/dp/B0CJXCPB4P NEW WEBSITE www.bluebellsforeverpodcast.com Follow us on Instagram and Facebook to see photos and updates www.instagram.com/bluebells_forever/ www.facebook.com/Bluebells-Forever-100660515010096

In this episode of the Brain & Life podcast, co-host Dr. Katy Peters is joined by Jessica Patay, mother, caregiver, and founder of the nonprofit We Are Brave Together. Jessica discusser her son's diagnosis with a rare genetic neurologic condition called Prader-Willi Syndrome and how it led her to found an organization whose mission is to preserve and protect the mental health of caregiving moms of disabled and neurodiverse children. Dr. Peters is then joined by Dr. Emily De Los Reyes, attending pediatric neurologist at Nationwide Children's and Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. They discuss exactly what Prader-Willi syndrome is, how it's diagnosed and treated, and what the future looks like for patients and their families.   Additional Resources We Are Brave Together How Parents Advocate for Their Children with Rare Diseases These Parents are Giving Their Teenager a Life of Adventure Despite Rett Syndrome Sibling Caregivers Share Rewards and Challenges   Other Brain & Life Episodes on this Topic Resiliency and Caregiving with Janet Fanaki Journalist Richard Engel on Parenting a Child with Rett Syndrome Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Jessica Patay @wearebravetogether; Dr. De Los Reyes @nationwidekids Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

Today we had the pleasure of chatting with Jessica Patay, the founder/executive director of We Are Brave Together. We talked about her personal story of her son's diagnosis with Prader-Willi Syndrome and how she was able to create an amazing community locally, and then duplicate that to support groups all over the United States. You can learn all about We Are Brave Together and the many services that they provide (including affordable retreats for moms!) at their website: https://www.wearebravetogether.org/ We also discussed the book that Jessica spearheaded and co-authored, Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight. You can find that book on her website or HERE on Amazon! Looking for more ways to connect with Jessica?! Here you go! Instagram Facebook Website Podcast

The world's first respite centre for people with Prader-Willi Syndrome opened in Co.Laois this weekend.But, what is Prader-Willi Syndrome (PWS)? And what impact will this have on people with PWS and their families?Rory, whose son Henry has PWS, joins guest host Claire McKenna to discuss, as well as Lynsey Moorehouse, Regional Operations Manager PWS at Resilience Healthcare.

Hello Brave Friends! Welcome to Season 7 of Brave Together Parenting, an empowering and truly helpful podcast for the parents of children, all ages, with all types of disabilities or unique needs. Our mission is to provide you, the caregiving parent, with resources to help answer your questions. Stories from other caregiving parents to help you feel less alone and starting the season, something NEW, interviews with thriving disabled adults to give you hope!I am Jessica Patay, your host and a parent to a son who is 21 with Prader Willi Syndrome. And I'm joined for Ask Us Anything episodes, as well as a few other episodes this season by two other brave moms, clinical psychologist, Dr. Zoe Shaw and life coach, Susanna Peace Lovell. Together, we tackle all your nitty gritty questions from the trenches and share what wisdom we have gathered on our collective journeys.This season is full of delicious newness, new podcast art, new title, new co-hosting opportunities, and new videos on our We Are Brave Together YouTube channel for each episode.We make this podcast as a lifeline for you. So please give us feedback, call into speakpipe and leave us messages with your questions or topic requests.We are here to offer you community and remind you that you are brave, you are beautiful and most definitely NOT ALONE. Welcome to Season 7! We thank you for tuning in every Wednesday and sharing our episodes with all your friends. We see you and we love you!Whether you have questions as a parent to a child with complex medical or mental health needs or you're someone looking to support a care-giving parent, we would LOVE to hear from you. If you have any topic requests or if you would like to ask a question, leave us a message here.Find more information about Licensed Psychotherapist, Dr. Zoe Shaw here. Find more information about Life Coach, Susanna Peace Lovell here.Find Susanna's book, Your True Self is Enough here.Find our first book from We Are Brave Together here.Find our Becoming Brave Together book trailer here.Find WABT 5K Fundraiser here. Thank you to our BIG, beautiful 5k sponsors!! Our TOP sponsors that we want to acknowledge and appreciate are: RISE Advocacy, GHJ Foundation, Torrance Memorial Medical Center, CMS Creative Management, Inc., the Patay Family and MRM Education. We are so grateful to these generous sponsors and so excited about our 5K, which will be accessible and truly a family friendly event! Learn more about our 5K here.Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here.Donate to our Retreats and

Amidst the challenges of unexpected medical diagnoses and hardship, Julie Foge found solace in surrendering to the Lord's presence and seeking support from her community. Julie shares her journey of finding hope and strength while she also processed the grief and challenges of navigating the world of special needs. Julie would love to connect with you at Leaning Into Love and on Instagram @JulieFoge , on Facebook @JulieLeutzFoge You can find out more about Prader-Willi Syndrome through this link. Connect with Pam on Instagram @TendingFields, through her website TendingFields.net or on Facebook @Tending Fields Mom's Group. We would love to have you there! #praderwilli #specialneedsmoms #NICUmom #findcommunity #bringittogod #walkingwithchrist #storiesoffaith

#elviscostello #lindaronstadt #bozscaggs #bonnieraitt #nicklowe Austin de Lone is an American keyboardist who records and tours with his own bands as well as with other artists, such as Bill Kirchen, Elvis Costello, Bonnie Raitt, Boz Scaggs, Nick Lowe, Commander Cody, and Loudon Wainwright. De Lone grew up in suburban Philadelphia, taking piano lessons at age 12. His early influences included Ray Charles and George Shearing. After stints as a student at the New England Conservatory of Music, Harvard University, and University of California, Berkeley, he moved to Greenwich Village.[3] While at Harvard, de Lone composed the song "One for One," which was the first single released by Linda Ronstadt and the Stone Poneys. Eggs over Easy In 1969, de Lone formed the band Eggs over Easy with Jack O'Hara and Brien Hopkins.[4] In 1970, Chas Chandler persuaded the band to record in London, but those recordings were not released. A four-night-a-week residency at a pub called the Tally-Ho in Kentish Town lasted more than a year. Eggs over Easy played a blend of blues, country, and rock that became known as pub rock. Regular attendees of their shows included members of Brinsley Schwarz and BBC disc jockey John Peel. In 1972, they returned to California and released their first album Good 'N' Cheap produced by Link Wray. The Moonlighters De Lone moved to Marin, California in 1972, where he met Bill Kirchen, who had been performing with Commander Cody and His Lost Planet Airmen. In the late 70s, de Lone joined Kirchen's side-project band, the Moonlighters. Their 1983 album Rush Hour was produced by Nick Lowe. Both de Lone and Kirchen later worked with Lowe and Elvis Costello. De Lone and Kirchen still record and perform together. In 2016, they released their duet album Transatlantica. The Christmas Jug Band De Lone is a member of the Christmas Jug Band, a collection of musicians who have been touring locally each holiday season since 1976, and releasing albums since 1987. The band has included musicians such as Dan Hicks, Tim Eschliman, Jim Rothermel, Lance Dickerson, Brien Hopkins, and Norton Buffalo. Richard de Lone Special Housing Project De Lone coordinates an annual fundraiser for eventual construction of the Richard de Lone Special Housing Project, a residential facility for people with Prader-Willi Syndrome, which de Lone's son Richard is afflicted with. As part of the 2007 event, Elvis Costello reunited with Clover, the band who backed him on his first album My Aim is True.

May 23 is Ashley and her husband Chris's nine year wedding anniversary, so it's only fitting that she celebrate with…her wedding planner, Katie Webb Brundige. As we enter wedding season, Katie is here to offer some clutch insider advice for brides, guests, and mother-in-laws (*cough* Lisa *cough*). We also delve into Katie's passion for the special needs community. In addition to running her events planning company Intertwined Events, she's also the co-founder of RAD (Rising Above Disabilities) Camp, which offers programs and camps for adults and children with developmental disabilities. Katie also shares her journey to adopt two remarkable special needs sons: five-year-old Alex, who has Autism and Prader-Willi Syndrome and two-year-old Riley, who has Down Syndrome. Katie lives in a world of love, compassion, and unstoppable energy. While we suspect she has more hours in the day than the average human, it's probably just that she has a larger-than-average sized heart. Simply put, she is straight up magic. And after this episode, we're convinced a podcast with your wedding planner should be the traditional nine year anniversary gift.Thanks as always for listening, and Happy Anniversary Ashley and Katie Chris! You can watch all our episodes and find bonus content on our YouTube channel. Questions, ideas or feedback? Email: yourmom@yourmom.co. Psst...our merch store is live! yourmom.co/shop

JB is loving the weather, and Hughesy is loving Dennis Armfield. We rip through the All Sports Report, then Nick Riewoldt is in studio to talk about life in Texas, and the Saints. Topics Hughes is in the house to reflect on a potential awkward interaction, Bradley from Cranbourne has a crack at $10k with Guernsey Cash, and Carlton legend David Rhys-Jones is in studio to raise money and awareness for Prader-Willi Syndrome. Then, Billy Brownless rings in from somewhere in the world to talk about The Amazing Race, we dive into the archives for an idiot song, and Hughesy's Joke is a tribute to his dog Barkly, who sadly passed away overnight.See omnystudio.com/listener for privacy information.

In this special episode, Quarters is joined by Carlton premiership player and Norm Smith medallist David Rhys-Jones to talk about his colourful career and a cause that is close to his heart. Rhys-Jones is launching a 15 day challenge (Kicking Goals for PWS: 15 Footy Memories in 15 Days) to help raise awareness for Prader-Willi Syndrome - a debilitating, life threatening illness that affects 1 in 1500 young Australians, including his son, Cooper. Link to donate: https://15for15.com.au/See omnystudio.com/listener for privacy information.

Dale Thomas and Kate McCarthy take a look at the headline act of Sir Doug Nicholls round, Sydney vs. Carlton. The modern-day rivalry GWS and the Bulldogs clash on Saturday and Daisy believes Sam Darcy is on the way to becoming the #1 forward in the game within 2 years. Carlton legend David Rhys-Jones is in the studio to talk about his time at the Swans, the Blues and showcasing his 15 Footy Memories in 15 Days, to raise awareness for a deadly disease - Prader-Willi Syndrome. You can donate: www.pwsavic.org.au -------- Add the show to your favourites on LiSTNR: https://listnr.com/podcasts/footy-talk-australian-rules-podcast  Listen on Apple: https://podcasts.apple.com/au/podcast/footy-talk-daily-australian-rules-podcast/id1673652644  Listen on Spotify: https://open.spotify.com/show/1q5RUW2KTONUoP8KF3ZZHY?si=6798bf7f4a1540be See omnystudio.com/listener for privacy information.

See omnystudio.com/listener for privacy information.

Guest friend this week is the legendary David Rhys-Jones, always a good chinwag. Aside from a catchup telling old footy stories, David is raising awareness of Prader-Willi Syndrome, David's son lives with PWS. You can find out more here, and for just 15 bucks buy a ticket in the PWS raffle, major prize a luxury trip to Bali. David talks us through a bit about PWS, which gets pretty much zero government support, so if you can spare a few bucks it's a ripping cause.Somehow, in amongst that, Dane manages to plug Tastebuds with Dane Swan. How does he tie it in? No idea. He just did. We also get a Swan FC update following his trip to the Sunshine Coast last weekend where he kicked a goal and had 25 touches. In the thirds, but hey it's pretty good. Dane reckons he has found his place in the thirds.Given David's history in Tassie we get his thoughts on whether the Tassie AFL team will succeed. And we ask him if he regrets any of the whacks he handed out on the field. There is one, he tells us who on the pod. And he tells a great story of his battle with Greg Williams, when he played with a broken jaw, and later when Diesel came to Carlton for the 1992 season.David talks about the brutal pre-seasons back in his day, which leads to him and Dane comparing 'sprays' from coaches. Wallsy was 'brutal' according to David, and Dane tells a couple of stories about Mick Malthouse being a bit out of control calling him 'an angry man'.Ralphy has some homework for the team, and for you, which is to watch this video of 'Scam Cam' on the Footy Show. David gives the back story to how it happened.David played with, and on, the legendary Bruce Doull and tells a couple of stories about him. And he tells us about his final game against West Coast in Perth, and how he forgot to tell Carlton that he was retiring.We chat about Dustin Martin and the criticism he's copping at the moment. Dane reckons people should lay off and enjoy Dusty while he's playing, David says that not a single Tigers support would be bagging Dusty, and Dane thinks that he might be the greatest Tiger of all time.And we talk concussions, and given they weren't measured in David's day, how he addressed them when he had what he thought was one.A great guest friend today in David Rhys-Jones, and don't forget to slip a few bucks and buy a raffle ticket at the Prader-Willi Syndrome site here.Follow us, share the pod with a mate, and support us if you feel the urge. If not, then as you were.Podcast : @swannyandfriendsDane: @danes84Samantha @samantharichesSupport this show http://supporter.acast.com/hump-day-with-swanny-and-friends. Hosted on Acast. See acast.com/privacy for more information.

Episode 28 - Join Jessica on her journey caring for Ryan, diagnosed with Prader-Willi Syndrome, navigating challenges with resilience and community support. Disclaimer: Please note that all information and content on the UK Health Radio Network, all its radio broadcasts and podcasts are provided by the authors, producers, presenters and companies themselves and is only intended as additional information to your general knowledge. As a service to our listeners/readers our programs/content are for general information and entertainment only.  The UK Health Radio Network does not recommend, endorse, or object to the views, products or topics expressed or discussed by show hosts or their guests, authors and interviewees.  We suggest you always consult with your own professional – personal, medical, financial or legal advisor. So please do not delay or disregard any professional – personal, medical, financial or legal advice received due to something you have heard or read on the UK Health Radio Network.

Send us a Text Message.Jessica Patay shares her journey as a caregiver for her son, Ryan, who was diagnosed with Prader-Willi Syndrome at five weeks. Prader-Willi Syndrome is a rare genetic disorder that requires 24/7 supervision and care due to its associated symptoms, including low muscle tone, delayed milestones, and an insatiable food drive. Jessica talks about the difficulties she faced with her newborn, Ryan, who was unable to cry or suck and needed a feeding tube and occupational therapy. Managing Ryan's anxiety about eating is an ongoing challenge that requires constant monitoring of the kitchen.Jessica discusses the impact of her son Ryan's condition on her family and the importance of maintaining a healthy balance. She prioritizes spending one-on-one time with her other children and taking trips without Ryan. Jessica also emphasizes the importance of having a supportive community and resources for caregivers. She has created an organization called "We Are Brave Together" to provide a platform for caregivers of disabled children to connect and find support.Jessica plans to set up a care plan for her son Ryan before she and her husband become incapacitated or pass away. She also emphasizes the need to take breaks as a caregiver and empower their children to survive without them. About Jessica:Jessica Patay is the founder and executive director of We Are Brave Together (WABT), a 501(c)(3)nonprofit organization that supports caregiving moms with children of all types of disabilities and neuro-diverse diagnoses. In addition, she is a sought-after speaker, podcast guest, writer retreat coordinator, fundraiser, mother of three, social influencer, and a champion of self-care practices and their positive effect on motherhood. Jessica excels at creating and supporting communities of caregiving moms, and she is a visionary for the disability community worldwide. Jessica's mission is to combat the isolation and burnout that these moms and their families face by creating supportive, resourceful, and empowering communities and meaningful connections. Her vision is that every family in the disability community is strengthened, equipped, and inspired for their unique journey. This vision has fueled WABT's growth in 6 years into an international community of over 2200 moms, representing all 50 states and 24 countries. Jessica has helped launch dozens of support groups throughout the U.S., New Zealand, and Australia. To extend her outreach, Jessica hosts a podcast, “Brave Together with Jessica Patay,” which offers a library of inspirational stories and resources for the disability community.Connect with Jessica:Web https://www.wearebravetogether.org/Facebook https://www.facebook.com/wearebravetogether/Support the Show.Confessions of a Reluctant Caregiver Sisterhood of Care, LLC Website: www.confessionsofareluctantcaregiver.com Like us on Facebook! Tweet with us on Twitter! Follow us on Instagram! Watch us on Youtube! Pin us on Pinterest! Link us on LinkedIn!Tune in on Whole Care Network

Jessica Patay shares her journey as a caregiver for her son, Ryan, who was diagnosed with Prader-Willi Syndrome at five weeks. Prader-Willi Syndrome is a rare genetic disorder that requires 24/7 supervision and care due to its associated symptoms, including low muscle tone, delayed milestones, and an insatiable food drive. Jessica talks about the difficulties she faced with her newborn, Ryan, who was unable to cry or suck and needed a feeding tube and occupational therapy. Managing Ryan's anxiety about eating is an ongoing challenge that requires constant monitoring of the kitchen. Jessica discusses the impact of her son Ryan's condition on her family and the importance of maintaining a healthy balance. She prioritizes spending one-on-one time with her other children and taking trips without Ryan. Jessica also emphasizes the importance of having a supportive community and resources for caregivers. She has created an organization called "We Are Brave Together" to provide a platform for caregivers of disabled children to connect and find support. Jessica plans to set up a care plan for her son Ryan before she and her husband become incapacitated or pass away. She also emphasizes the need to take breaks as a caregiver and empower their children to survive without them. About Jessica: Jessica Patay is the founder and executive director of We Are Brave Together (WABT), a 501(c)(3)nonprofit organization that supports caregiving moms with children of all types of disabilities and neuro-diverse diagnoses. In addition, she is a sought-after speaker, podcast guest, writer retreat coordinator, fundraiser, mother of three, social influencer, and a champion of self-care practices and their positive effect on motherhood. Jessica excels at creating and supporting communities of caregiving moms, and she is a visionary for the disability community worldwide. Jessica's mission is to combat the isolation and burnout that these moms and their families face by creating supportive, resourceful, and empowering communities and meaningful connections. Her vision is that every family in the disability community is strengthened, equipped, and inspired for their unique journey. This vision has fueled WABT's growth in 6 years into an international community of over 2200 moms, representing all 50 states and 24 countries. Jessica has helped launch dozens of support groups throughout the U.S., New Zealand, and Australia. To extend her outreach, Jessica hosts a podcast, “Brave Together with Jessica Patay,” which offers a library of inspirational stories and resources for the disability community. Connect with Jessica: Web https://www.wearebravetogether.org/ Facebook https://www.facebook.com/wearebravetogether/ Instagram https://www.instagram.com/wearebravetogether/ Support the show Confessions of a Reluctant Caregiver Sisterhood of Care, LLC Website: www.confessionsofareluctantcaregiver.com Like us on Facebook! Tweet with us on Twitter! Follow us on Instagram! Watch us on Youtube! Pin us on Pinterest! Link us on LinkedIn! Tune in on Whole Care Network

The recent disappearance of 40-year-old Katie VaClaw brought a lot of attention to Prader-Willi Syndrome. Katie's sister, Stacy Lard, talks about what life is like for Katie and the struggles she deals with due to PWS. Katie McDaniel also has a sister with PWS and she talks about the numerous disabilities that go along with PWS.

Our guest this week is Siggi Thosseinn-Gudmundson of Akranes, Iceland who is a healthcare professional and father of five including four with special needs.Siggi and his wife, Fridur, have known each other since they were 15 years of age and have been married for 8 years. They are the proud parents of five children: Sittimfia (7), who has ADHD, Gudmuntuk (12), who is Autistic and non-verbal, Kolbrun (14) who has Prader-Willi Syndrome and Autism, and Matthias (16) who has Autism. Very sadly they lost your first child, Oscar, at 24 weeks gestation more than 15 years ago. We'll hear how Siggi and Fridur have perseverd the loss of a child and embraced being parents to children with a wide range of special healthcare needs. We also learn how Siggi has struggled balancing family and work along with a limited amount of formal education. What Siggi may lack from an academic perspective, he more than makes up with his commitment to family and being present: physically, emotionally and spiritually for his wife and children. It's an uplifting and powerful story on this week's episode of the Special Fathers Network Dad to Dad Podcast.Show Links - Email – Fridursiggi@gmail.comFacebook - https://www.facebook.com/fridursiggiSpecial Fathers Network -SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channe... Please support the SFN. Click here to donate: https://21stcenturydads.org/do...Find out about Horizon Therapeutics – Science and Compassion Working Together To Transform Lives. https://www.horizontherapeutics.com/Special Fathers Network: https://21stcenturydads.org/Discover more about the Dads Honor Ride 2023 - https://21stcenturydads.org/2023-dads-honor-ride/

In this episode, we review the high-yield topic of ⁠Prader-Willi Syndrome⁠ from the Pediatrics section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Medbullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets

On the cover of Sports Illustrated in 1978, he was labeled “This Year's Phenom.” Sounds great, unless you're a 21-year-old without the skills to handle the pressure and scrutiny from the media, teammates, other players and fans. It didn't help when Clint Hurdle started drinking to help numb the realization he wasn't living up to expectations. Clint bounced around several teams as a player and when he retired in 1987, he when straight into coaching. He also kept drinking. Two marriages and one daughter later, Clint decided to get sober in 1999. At the time he was the Rockies hitting instructor. Sobriety brought Clint a third marriage (going on 23 years), two more children and a transition into being a manager for the Rockies and Pirates for a total of 17 seasons. Today he continues to help the Rockies as a Special Assistant to the GM where he works with Colorado's four minor league teams. He's faced a lot: being an alcoholic, divorced twice, a child with a birth defect and countless ups and downs in baseball. Yet through it all he remains positive and committed to giving. Clint sends out daily emails, both Devotional and Encouraging. Sign up to receive either or both at ClintHurdle.com. To find out more about Prader Willi Syndrome, visit pwsausa.org.

In extreme parenting, mastering flexibility is key! We never know what is around the corner and our kid's unique needs keep us permanently on our toes. But we are also the ones providing routine for our kids, especially those who struggle with anxiety. So we have to stay nimble, dancing between providing the necessary structure and going with the flow enough to avoid a mental break! In today's story we hear form Amanda Griffith-Atkins who shares about a family vacation she went on with her son, who has Prader-Willi Syndrome. Then host, Jessica Patay interviews Amanda about all things PWS parenting, flexibility and advice for parents expecting too much from their differently abled children.Amanda is a licensed marriage and family therapist and founder of Amanda Atkins Counseling Group in Chicago. Her specialties include couple's issues, grief and loss (particularly partner, parent, or child loss), chronic or terminal illness, infertility, and postpartum mood disorders. She enjoys treating issues related to parenting, including the complex demands placed on parents of disabled children. Due to her extensive experience in grief work, she's partnered with large corporations to provide on-site therapy amid workplace crises and tragedy. She's also worked with nonprofits and corporations, presenting on mental health issues in the workplace. Before founding AACG in 2015, Amanda worked in community mental health, a group practice, and Hospice. Amanda holds a master's degree from Northwestern University and is trained in EMDR and EFT. She has advanced training in postpartum issues and is certified in perinatal mental health. She is an in-demand speaker and media contributor, featured in the Chicago Tribune, Crain's Chicago, Better, Chicago Parent, POPSUGAR and more.  Amanda lives with her husband, 3 sons, beloved dog, and 2 mediocre cats. Her oldest son Asher has Prader-Willi Syndrome. Find Amanda on Instagram here and here. Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here.Donate to our Retreats and Respite Scholarships here.Donate to keep this podcast going here.Can't get enough of the Brave Together Podcast?Follow our Instagram Page @wearebravetogether or on Facebook.Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.orgIf you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!

In this special edition of the podcast, hosts Jedd Zetzer & Harrison Hymans are joined by Carlton legend David Rhys-Jones to talk about the amazing work he is doing in supporting the Prader-Willi Syndrome Association. In May 2023, the 15 for 15 challenge will raise awareness and funds for Prader-Willi Syndrome. David joins to talk about that, as well as his journey in football and life, plus much more.For more information, head to the Prader-Willi Syndrome Association Victoria's website: www.pwsavic.org.auTo donate and join the PWS 15 for 15 Challenge, please visit: www.givenow.com.au/pws15for15challenge2023Follow us on Twitter: twitter.com/BluesFootyFollow us on Instagram: instagram.com/blues_footyLike our Facebook page: facebook.com/CarltonBluesFooty

Amanda Griffith-Atkins, LMFT joins me to share her story of navigating parenting a child with a disability after birth trauma. Amanda is a fellow therapist and has built an incredible community in this space to support other parents experiencing the challenges that come with disability parenting.  She has a beautiful way of creating space to acknowledge the struggle and the darkness, while still providing hope. Join us as we discuss the complexities of parenting children with disabilities, while also trying to recover from a traumatic experience. You can find Amanda on Instagram @amanda.griffith.atkins or her website.Guest Bio:Amanda is a licensed marriage and family therapist and founder of Amanda Atkins Counseling Group in Chicago. Her specialties include couple's issues, grief and loss (particularly partner, parent, or child loss), chronic or terminal illness, infertility, and postpartum mood disorders. She enjoys treating issues related to parenting, including the complex demands placed on parents of disabled children. Due to her extensive experience in grief work, she's partnered with large corporations to provide on-site therapy amid workplace crises and tragedy. She's also worked with nonprofits and corporations, presenting on mental health issues in the workplace.Before founding AACG in 2015, Amanda worked in community mental health, a group practice, and Hospice.Amanda holds a master's degree from Northwestern University and is trained in EMDR and EFT. She has advanced training in postpartum issues and is certified in perinatal mental health.  She is an in-demand speaker and media contributor, featured in the Chicago Tribune, Crain's Chicago, Better, Chicago Parent, POPSUGAR and more.  Amanda lives with her husband, 3 sons, beloved dog, and 2 mediocre cats.  Her oldest son Asher has Prader-Willi Syndrome. 

A client has muscle tightness, pain, scoliosis, and a tendency to complain all the time about everything. And by the way, he is hungry, literally every waking moment. Can massage therapy help?   Sponsors:     Books of Discovery: www.booksofdiscovery.com     Host Bio:                    Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist's Guide to Pathology, now in its seventh edition, which is used in massage schools worldwide. Werner is also a long-time Massage & Bodywork columnist, most notably of the Pathology Perspectives column. Werner is also ABMP's partner on Pocket Pathology, a web-based app and quick reference program that puts key information for nearly 200 common pathologies at your fingertips. Werner's books are available at www.booksofdiscovery.com. And more information about her is available at www.ruthwerner.com.                    Recent Articles by Ruth:         “Working with Invisible Pain,” Massage & Bodywork magazine, November/December 2022, page 36, http://www.massageandbodyworkdigital.com/i/1481961-november-december-2022/38         “Unpacking the Long Haul,” Massage & Bodywork magazine, January/February 2022, page 35, www.massageandbodyworkdigital.com/i/1439667-january-february-2022/36.   “Chemotherapy-Induced Peripheral Neuropathy and Massage Therapy,” Massage & Bodywork magazine, September/October 2021, page 33, http://www.massageandbodyworkdigital.com/i/1402696-september-october-2021/34.           “Pharmacology Basics for Massage Therapists,” Massage & Bodywork magazine, July/August 2021, page 32, www.massageandbodyworkdigital.com/i/1384577-july-august-2021/34.       Resources:    Pocket Pathology: https://www.abmp.com/abmp-pocket-pathology-app   Bohonowych, J. et al. (2019) ‘The Global Prader–Willi Syndrome Registry: Development, Launch, and Early Demographics', Genes, 10(9), p. 713. Available at: https://doi.org/10.3390/genes10090713.   FPWR (no date) What is Prader-Willi Syndrome. Available at: https://www.fpwr.org/what-is-prader-willi-syndrome (Accessed: 21 November 2022).   ‘Information for Medical Professionals' (no date) IPWSO. Available at: https://ipwso.org/information-for-medical-professionals/ (Accessed: 21 November 2022).   ‘Prader-Willi Syndrome' (no date) NORD (National Organization for Rare Disorders). Available at: https://rarediseases.org/rare-diseases/prader-willi-syndrome/ (Accessed: 21 November 2022).

Dr. Dan speaks to Mom, Special Needs Parent, Advocate, and Coach Rachel Pastiloff. Rachel talks to Dr. Dan about parenting, family, and her road to becoming a Manifesting Mom. Rachel is mom to two sons (one with special needs) and her conversation with Dr. Dan is filled with wisdom, strength, and grace.Listening to Rachel tell her story is riveting, enlightening, powerful, and, at times, painful – listeners will learn from this beautiful, courageous episode about life, love, challenges, grit, honesty, acceptance, grief, and so much more.Rachel Pastiloff tells Dr. Dan how she learned to embrace her parenting journey – specifically the experience of discussing (and admitting) that special needs parenting is hard. Rachel discusses her wonderful son (he has a dual diagnosis of Prader Willi Syndrome and autism), her special needs family/community, her typical son's experience, and how so much pressure falls unfairly on women/moms. By speaking her truth out loud to her sister (yes, her sister is recent guest Jennifer Pastiloff!)Rachel made space for embracing, healing, and loving. Rachel passionately shares how self-care is essential to all parents, how families must support the siblings of special needs children (a topic that is rarely discussed), and the reality that not all families live perfect lives despite what we see online. Rachel Pastiloff is a native of Philadelphia/South Jersey. Rachel is a mother of two boys. In 2009 Rachel's oldest was diagnosed with a rare incurable genetic disorder called Prader Willi Syndrome. The following year her son was diagnosed again with Autism. Both of these events would help shift the direction of Rachel's life. She began her path with health and wellness to create a better life for her family. It then became her passion. Rachel became a certified yoga teacher in 2012 and is a graduate of The Institute for Integrative Nutrition as a Health and Wellness Coach. Rachel is also the founder of A Manifesting Mom. Follow Rachel on Instagram and on TikTok.Email your parenting questions to Dr. Dan podcast@drdanpeters.com (we might answer on a future episode).Follow us @parentfootprintpodcast (Instagram, Facebook) and @drdanpeters (Twitter).Listen, follow, and leave us a review on Amazon Music, Apple Podcasts, Wondery, or wherever you like to listen!Don't forget, you can hear every episode one week early and ad-free by subscribing to Wondery+ in the @WonderyMedia App.For more information:www.exactlyrightmedia.com www.drdanpeters.comFor podcast merch:www.exactlyrightmedia.com/parent-footprint-shopSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Our guests this week on the SFN Dad To Dad Podcast are Jessica & Chris Patay of Rancho Palos Verdes, CA. The Patays have been married for 25 years and are proud parents of three children: Luke (21), Kate (16), and middle child Ryan (18) who was born with a rare genetic disorder known as Prader-Willi Syndrome.We'll learn about the Patay family journey, Prader-Willi Syndrome and how Jessica started We Are Better Together, a non profit organization that provides respite, community, and resources for mothers caring for children of any age with disabilities, unique needs, or other medical or mental health challenges. We also learn about the We Are Better Together Podcast Jessica hosts. It's a fascinating and inspiring story here on this week's SFN Dad to Dad Podcast.LinkedIn Jessica - https://www.linkedin.com/in/jessica-patay-06094446/ LinkedIn Chris - https://www.linkedin.com/in/chrispatay/ Email Jessica - wearebravetogether@gmail.com Email Chris - chpatay@gmail.com Website – We Are Brave Together - https://www.wearebravetogether.org Website – www.jessicapatay.com Prader-Willi California Foundation - www.PWCF.org Prader-Willi Syndrome Association - https://www.pwsausa.org Foundation for Prader-Willi Research - www.fpwr.org Harbor Regional Center – https://www.harborrc.org/ Please take the SFN Early Intervention Parent Survey and as a token gift, receive a Great Dad Coin - https://tinyurl.com/5n869y2y Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations. Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/

Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. It affects males and females with equal frequency and affects all races and ethnicities and is recognized as one of the most common genetic causes of life-threatening childhood obesity. To discuss this disorder and what can be done to help people living with it, Jonathan is joined now by Dr. Tony Holland, Professor Emeritus at the University of Cambridge, UK & President of the International Prader-Willi Syndrome Organisation.

Case studies, stories, and learning from others are the best ways to learn which is why I decided to break down Prader-Willi Syndrome (PWS) through case study reviews.  Imagine never feeling full or satisfied. That's exactly what people with Prader-Willi Syndrome experience.  In this episode, I review this genetic condition that affects chromosome 15. Here's what you'll learn in this episode: What Prader-Willi Syndrome is The characteristics of Prader-Willi Syndrome (PWS) How to manage and treat the condition using medical nutrition therapy A review of 2 case studies with different nutrition therapy recommendations As you listen to the episode, I want you to think big picture about the mechanism behind the symptoms/characteristics of the syndrome and how it impacts nutrition recommendations.  I'd love for you to share your BIG wins with me. Let me know when you pass the RD Exam so I can give you a shout-out and officially welcome you into the RD community. You can contact me at info@jananicholl.com  

Today our guest is former MLB manager, Clint Hurdle. Following a ten-year playing career in the big leagues (Kansas City Royals, Cincinnati Reds, New York Mets and St. Louis Cardinals), Clint successfully managed the Colorado Rockies (2002-2009) and Pittsburgh Pirates (2011-2019). Clint was the 2013 National League Manager of the Year. Hurdle describes the pressure of being on the cover of Sports Illustrated at the age of 20 and his turning point at age 40 to follow Jesus Christ.  He details his battle with alcoholism and overcoming both personal and professional adversity—including being fired three times, two failed marriages and raising a daughter with special needs (Prader-Willi Syndrome). You will be encouraged by Clint's authenticity and his desire to impact others as a “hope-broker.” Be sure to subscribe to the Post Game with Paul Golden podcast wherever you listen to podcasts.www.clinthurdle.com  www.paulgolden.org

For a lot of people they think about lunch or dinner just before they are about to eat. But for those who suffer with Prader-Willi syndrome, food is an all consuming aspect in their lives that has to be carefully administered. Ann O'Neill is mother to Oisin who suffers with Prader-Willi syndrome and she joined Sean give a glimpse of what life is like living with this syndrome.

Prader Wili Syndrome – the condition where you never feel full and constantly seek food. We hear from a parent who wants the stigma to lift for her 9 year old son Henry. CEO of Breast Cancer Ireland Aisling Hurley discusses the latest advancements in treatments And performance nutritionist Sinead Bradbury gives her take on a holistic view of health and how you might not view yourself as an athlete but you should treat yourself like one

Lara Pullen is, among many things, a scientist with a Ph.D. in microbiology/immunology, the president and co-founder of the Chion Foundation, and a medical writer on topics such as organ transplant and rheumatology. Along with all of these impressive titles she is also a mother of three, her youngest son, Kian, diagnosed with Prader-Willi Syndrome. So, in simple terms, she's a unicorn and a national treasure; you should have seen me study just to keep up in the conversation. In this episode, Lara takes me through her journey, starting with her son's diagnosis of Prader-Wili Syndrome (PWS) at 18 months old. Then to her relentless pursuit to find the best care and high-performance team of medical professionals. The way she applied her science background to find the best drug for her son, followed by her process with the FDA and the clinical trial that will ultimately benefit so many the world over. "I took my science degree and I saved my child's life. I did that as a mom. As a mom and a scientist. I don't know if I would have accomplished anything as impressive if I stayed in the laboratory"- Dr. Lara Pullen The goal of the LittleWins Podcast for me has always been to highlight stories of individuals and their journey to their incredible solutions, contributions, and dedication to improving the lives of us all. As a bonus, we get to feel more connected to each other, learn a lot, and even inspire one another. If nothing else, I promise this will make you smile. I do it all the time. --- Send in a voice message: https://anchor.fm/littlewins/message Support this podcast: https://anchor.fm/littlewins/support

Fellow mom in the trenches, Amanda Atkins, joins Kim & Allie to share about the experience of having a child with a rare genetic syndrome, in this case, Prader Willi Syndrome. Amanda is a Chicago-based therapist, whose Instagram feed is dedicated to helping others process the grief, and disappointment that can often accompany parenting a child with a disability. Amanda's openness and willingness to share her vulnerability make the questions and subject matter flow easily, whether discussing NICU time, the Britney Spears case, hashtags, or locked cabinets. Join them as they discuss their experiences of diagnosis, the challenges of early parenting in isolation, and their efforts to confront their own ableism, in this conversation from July 2021. To learn more about PWS, or to donate toward research and programming, please visit the Foundation for Prader Willi Research. If you'd like to know more about Amanda, her practice, or to engage her services in finding a therapist for YOU, please visit her website: http://www.amandaatkinschicago.com/. Please follow, like, subscribe for more @otfrpod --- Send in a voice message: https://anchor.fm/otfrpod/message

In a bid to stay up with the relevant issues in Football, which this week seem to be about being called soft and weak...We thought we'd get an expert on the matter in to discuss!Premiership player and Norm Smith Medalist David Rhys-Jones joins us this week to unpack that, chat about the good ol days and spread awareness about Prader-Willi Syndrome that his young man lives with. A great yarn with a great of the game, you will find links to support his worthy cause below, if you can. Thank you & Enjoy.Follow & support us elsewherePodcast : @swannyandfriendsDane: @danes84Samantha @samantharichesRalphy: Year Round CarnivalSupport us in the Merch store: Shop here :)Special Guest: David Rhys-Jones - Follow his cause on Facebook here and check out the Prader-Willi Syndrome website for more information here Support this show http://supporter.acast.com/hump-day-with-swanny-and-friends. See acast.com/privacy for privacy and opt-out information.

What are your OT thoughts on this? What approach would you take with a similar potential client and family? CAMILLE, from Connecticut, lives with a rare genetic condition called Prader-Willi Syndrome, a condition best known for creating an insatiable sense of hunger in the individual. The craving is so strong that if left alone and with access to food, a person with Prader-Willi Syndrome could eat themselves to death. That means Larry and Camille's mother Kim must create a completely ‘food secure' environment, including padlocking kitchen cabinets and having an alarm on the kitchen door to stop Camille foraging for snacks.

I really enjoyed chatting with one of the tough men of football, 1987 Carlton Blues premiership player David Rhys-Jones on Sports Legends with Bevo. We spoke about why it was so tough playing in the brutal 80's, some of his funny team mates and the famous Battle of Britain exhibition match with North Melbourne that quickly became somewhat of a bloodbath. His son Cooper has a rare condition called Prader-Willi Syndrome and Rhys has organised a 15 for 15 challenge to raise money for this very important charity. If you want to donate or find out more go to the David Rhys-Jones Facebook page. Thanks so much to Rhys for his time, to D'Arcy Evans for helping arrange the interview, to PodBooth for putting this great video together and our sponsor Anytime Fitness.

Hello! This week I am talking with Anne Fricke. Anne is an author, poet, podcaster and mom. She is all about people sharing their stories and I'm glad she gets to share hers with us! Anne's daughter, Frey's has Prader-Willi Syndrome and she describes how the rare disorder impacted her life and her story.  We discuss the stark contrast between the worlds we grew up in and the world we want to see now for our children, especially the special needs ones. Her words about others being called and creative to help inclusion are truly inspiring.  Anne shares how writing down her story opened up so many wounds and how therapeutic it truly is for mother (& dads) to find a way to write their stories and explore all those emotions and struggles they felt along the way. Anne also gives tips on how to start journaling! I'm challenging listeners this week to choose a method and implement it. Get to writing, friends! Connect with Anne:IG: https://www.instagram.com/walkingwithfreya/Twitter: https://twitter.com/AnneFricke1Buy JournalConnect with Kara:IG: https://www.instagram.com/Kararyska/Website: https://www.kararyska.com/Pathway to Peace Consult: Link HereGroup Coaching Program: Schedule a ConsultFull Show Notes Click HERE to Join The Special Needs Mom Podcast Community

Jessica Patay is a mother, wife, and advocate/cheerleader for Special Needs Mothers. She has been married to her husband, Chris, for 23 years and they reside in the Palos Verdes area in Southern California. They have two sons and a daughter, all teenagers. Their second son, age 17, was born with a rare, medically complex genetic disorder, called Prader-Willi syndrome. Because Jessica is passionate about serving, mentoring, and inspiring other Special Needs Moms, she launched and leads a non-profit organization called We Are Brave Together. WABT provides resources, respite, support groups, mentoring and inspiration for moms caring for children or adult children, any age, with any diagnosis, disability or challenge. She believes in the power of gathering to empower, strengthen and uplift moms in their unique, diverse and difficult journeys. WABT offers support groups, workshops, retreats and inspirational events. You can find out more at wearebravetogether.com and see their resourceful and inspirational posts on Instagram @wearebravetogether. To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review! --- Support this podcast: https://anchor.fm/jess-ronne/support

We chat with a unique family from our clinic on this episode to bring awareness to Prader Willi Syndrome. We are joined by Gabriella and her son Pedrito, discussing what they have done to help Pedro make smart choices independently and the challenges that came with doing that. This followed by our Registered Dietician, Eva Nestor, explaining her role in educating families on how to create and follow a dietary plan and empower themselves when they are making these decisions on their own.

Rudolf Baumgartner, MD, Chief Medical Officer and Head of Clinical Development at Saniona, gives an overview of Prader-Willi syndrome (PWS)

Rudolf Baumgartner, MD, Chief Medical Officer and Head of Clinical Development at Saniona, gives an overview of Prader-Willi syndrome (PWS) and tesomet, a drug combination under investigation for the treatment of PWS. As Dr. Baumgartner explains, PWS is a rare genetic endocrine condition that causes hypotonia and hyperphagia. It is caused by genetic abnormalities in the proximal long arm of chromosome 15. PWS is usually detected in childhood due to hypotonic and hyperphagic features of this disorder. While the obsession with food is the overwhelming symptom of PWS, the children have several other symptoms, including numerous cognitive and behavioral problems.Unfortunately, there is currently no treatment approved for this condition. However, efforts by organizations such as the Prader-Willi Syndrome Association are helping to raise awareness and funds to find therapies for this rare condition.

- A discussion following the Presidential EO dated 1/20/2021 revoking permit for Keystone XL pipeline - Clarification of the extent of the permit - a section from Edmonton, AB to Steele City, NE - We discuss what Enbridge has done to date in adding capacity from Canada to Cushing, OK. And why this matters. - Is this really a big deal or simply a political football for all sides? - Are democrat policies good for the oil industry that has tended to exhibit signs of Prader- Willi Syndrome when left to its own devices? References https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-protecting-public-health-and-environment-and-restoring-science-to-tackle-climate-crisis/ https://rbnenergy.com/with-or-without-you-how-will-keystone-xls-latest-setback-impact-canadian-crude-oil-producers https://en.wikipedia.org/wiki/Prader%E2%80%93Willi_syndrome#:~:text=Prader%E2%80%93Willi%20syndrome%20(PWS),obesity%20and%20type%202%20diabetes.

This episode covers Prader-Willi Syndrome.Written notes can be found at https://zerotofinals.com/paediatrics/genetics/prader-willi/ or in the genetics section in the Zero to Finals paediatrics book.The audio in the episode was expertly edited by Harry Watchman.