Shows
Healthed PodcastsAngelman Syndrome - Gene therapyIn this episode: How gene therapy works The conditions for which gene therapy is currently approved The future direction of gene therapy and in particular its potential for treating conditions such as Angelman Syndrome Expert: Prof David Segal, Biochemistry and Molecular Medicine, Pharmacology This podcast is intended to be medical advice that is designed for health professionals only. We do not recommend you use this podcast as a substitute for a consult with a qualified health professional. Foundation for Angelman Syndrome Therapeutics (FAST) is committed to assisting i...
2025-11-1416 min
Angelman Syndrome Foundation PodcastAdvocacy Abby: Opening Doors to Resources and ReliefShare Your Feedback or Recommend New TopicsIn this episode, Amanda sits down with Abby Zachritz, better known as Advocacy Abby, the Director of Family Advocacy at Support Now and creator of the Connect grants database. Abby shares how her personal journey as a mom navigating the disability world inspired her to help other families access financial assistance for therapies, adaptive equipment, and more. Together, they discuss how Support Now’s all-in-one platform simplifies fundraising and connects families to thousands of verified grants, so no one has to face financial barriers alone. Whether you’re just beginning your...
2025-11-1045 minAngelman Syndrome Foundation PodcastAdvocating for Access: How Policy Shapes the Future of Gene TherapyShare Your Feedback or Recommend New TopicsASF CEO Amanda Moore talks with former Congressman Erik Paulsen, Chairman of the Institute for Gene Therapies, about how policy and advocacy are shaping the future of gene therapy for rare diseases like Angelman syndrome. They discuss the need for modernized healthcare policies, better access to treatment, and how collaboration across patient groups and policymakers can help make life-changing therapies available to all.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.
2025-10-3024 min
Pflegende Eltern: LebensgeschichtenYvonnes Engagement für Familien mit Angelman-SyndromYvonne ist Mama eines Sohnes mit Angelman-Syndrom, berufstätig, Obfrau eines österreichweiten Vereins für betroffene Familien – und Autorin. Sie erzählt von der Diagnose, den schlaflosen Nächten, der Kraft aus Gemeinschaft und warum ihr Sohn sie zu einem neuen Menschen gemacht hat.Shownotes:Mehr zum Buch von Yvonne: https://www.buchschmiede.at/app/author/4169-Yvonne-OtzelbergerMehr zum Angelman Verein Österreich: https://www.angelman.at/Du möchtest auch gern deine Geschichte erzählen und unseren Podcast mitgestalten? Dann melde dich gern bei uns (innovation@lebensgross.at).Ins Leben gerufen wurde der Podcast vom Innovationsnetzwerk zur Entlas...
2025-10-1327 minAngelman Syndrome Foundation PodcastRest Assured: Safe Sleep for Angelman FamiliesShare Your Feedback or Recommend New TopicsTired nights, travel challenges, and endless insurance hurdles... sound familiar? In this episode, guest host Liz Thompson, Development Director at ASF, talks with Jon and Amara Smith, Angelman parents and founders of Safe Place Bedding, about practical ways families can create safer, calmer sleep spaces. They share tips for traveling, navigating insurance coverage, and choosing the right safety bed. Plus, how their partnership with ASF helps families “live without limits.”+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Inst...
2025-10-1033 min
Nucleate PodcastHeartbreak to Hope: A Mother’s Mission to Cure Angelman Syndrome | Dr Allyson Berent, CSO of FASTIn this episode, Allyson Berent, Chief Science Officer, Foundation For Angelman Syndrome Therapeutics (FAST), shares her remarkable journey from a career in veterinary medicine to becoming a leading advocate and innovator in the field of rare disease drug development, inspired by her daughter’s diagnosis with Angelman syndrome. She recounts the challenges of obtaining an early diagnosis, the emotional impact on her family, and her determination to find solutions where none existed. Allison describes how she immersed herself in scientific research, connected with experts, and joined the Foundation for Angelman Syndrome Therapeutics, eventually helping to launch and lead multiple in...
2025-10-061h 12
Dad to Dad PodcastSFN Dad To Dad 395 - Mark Reinfeld of Boulder, CO A Chef, Author, Founder of Vegan Fusion Culinary Academy & Father Of A Son With AngelmanOur guest this week is Mark Reinfeld of Boulder, CO who is an award-winning chef, best-selling author and authority on plant-based cuisine. He is also the father of two young boys, including one with Angelman SyndromeMark and his wife, Ashley Boudet, have been married for 10 years and are the proud parents of two boys: River (7) and Sage (9) who has Angelman Syndrome. With more than two decades of experience, Chef Mark has written several acclaimed cookbooks, including The 30-Minute Vegan series, and has been recognized as a leader in the vegan and conscious cooking sp...
2025-09-1258 minAngelman Syndrome Foundation PodcastPlanning for the Future: ASF Housing Champions Share Their JourneysShare Your Feedback or Recommend New TopicsIn this episode, guest host Kathryn Ely, ASF's Family Resource Director, leads a candid discussion with ASF’s Adult Housing Champions, a group of parents and caregivers navigating the complex world of adult housing for individuals with Angelman syndrome. Hear from each Housing Champion about emotional decisions, practical advice, and their inspiring stories of independence and community connection.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Fo...
2025-09-081h 06Angelman Syndrome Foundation PodcastInspired Careers: Siblings and Relatives Share Their JourneysShare Your Feedback or Recommend New TopicsIn this ASF podcast episode, guest host Chloe Knouff brings together siblings and relatives of individuals living with Angelman syndrome to explore how their loved ones inspired their careers. From special education and disability support to genetic counseling, research, and public health, each guest shares a deeply personal journey of resilience, advocacy, and self-discovery.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman...
2025-08-2749 minAngelman Syndrome Foundation PodcastTalking Toileting with Dr. Colin MuethingShare Your Feedback or Recommend New TopicsToileting is one of the most common (and often most challenging) milestones for individuals with Angelman syndrome. In this episode, Dr. Colin Muething, Director of the Complex Behavior Support Program at Marcus Autism Center, shares practical, evidence-based strategies for toilet training children and adults with developmental disabilities. From readiness signs and starting early, to overcoming public restroom fears, addressing constipation, and ensuring school collaboration, Dr. Muething explains why he believes every person is trainable. Learn how to set realistic goals, maintain consistency, and celebrate progress.
2025-08-1457 min
Jake's Take with Jacob ElyacharDREW ANGELMAN TALKS CT DOC SERIES, ‘ALL STARS 5’ & PREVIEWS ‘VETS & NEW THREATS’ | Jake’s Take Special #16I always enjoy welcoming my friend, Drew Angelman, as a guest on the Jake’s Take with Jacob Elyachar Podcast. Drew is the creator of Angelcake Entertainment. He has covered the popular MTV reality competition series, The Challenge, since Final Reckoning and many of its spin-offs, including The Challenge: All Stars, The Challenge: USA, and The Challenge: World Championship. Drew also gave fans crash courses on some of the show’s top icons, including Derrick Kosinski, Jenna Compono, Johnny Bananas, Leroy Garrett, Tori Deal, Zach Nichols, and the late Diem Brown. He also delivered a three-part documentary on two-t...
2025-07-2359 min
Through The RoughIn the Middle of It: Kim’s Journey with AngelmanThis isn’t a story told after the storm—Kim is still in it. When her son Ezra was diagnosed with Angelman Syndrome, everything changed. From navigating medical systems to grieving the milestones that might never come, Kim shares what it’s like to live inside a reality most people only discuss once they’ve survived it.She’s honest, emotional, and real about what it takes to show up every day for a child whose needs the world rarely understands.For anyone walking through the unknown—this conversation is for you.Learn more about A...
2025-07-111h 32
Mas Que RarasDesde Buenos Aires a Houston, Texas: Hablando del síndrome de Angelman y del tratamiento de enfermedades genéticas con el Dr. Carlos BacinoEn este episodio de Más Que Raras, tenemos el privilegio de conversar con el Dr. Carlos Bacino, un referente internacional en genética molecular y humana. Con una sólida formación académica y décadas de experiencia, el Dr. Bacino ha dedicado su carrera al diagnóstico y tratamiento de enfermedades genéticas raras. Actualmente dirige la Clínica del Síndrome de Angelman y el laboratorio de citogenética en Baylor Genetics, desde donde lidera esfuerzos pioneros en investigación clínica y atención personalizada. En esta entrevista, nos habla de los avances científicos en su cam...
2025-06-2541 min
La Brevet Card3x31 - Pedaleando por la investigación del AngelmanVolvemos a hacer un esfuerzo por publicar un nuevo episodio,y esta vez con una muy buena razón para ello. Y es que Iñigo, al que ya conocéis de sobra de su paso por aquí para hablar de los brevets que organizamos en Navarra, se vuelve a pasar, esta vez junto a Joseba Antxustegi, para hablar del síndrome de Angelman y la asociación ASA que Joseba preside.Nos cuentan en qué consiste esta enfermedad rara, cuáles son sus consecuencias y a qué se dedican desde la asociación. Y te...
2025-06-2253 min
4. vaktin38. Angelman -Spjall við móðir barns með Angelman heilkenniHún Sirrý kom til okkar í spjall og gaf okkur innsýn í líf fjölskyldunnar. Þau hjónin eiga 4 börn og yngsta stelpan þeirra Sara Kristín fædd 2015 er með Angelman heilkenni.Hún segir okkur frá foreldrahlutverkinu á mjög einlægan hátt.Þessi þáttur er í boði:-Góðvildar - Styrktarfélagið Góðvild hefur það markmið að styðja við verkefni sem bæta hag langveikra og fatlaðra barna á Íslandi og fjölskyldna þeirra. Hægt er að styrkja Góðvild og með því er verið að styðja við fjöldann allan af verkefnum sem bæta...
2025-02-271h 19Angelman Syndrome Foundation PodcastThe History of Disabilities with Hannah OppenheimShare Your Feedback or Recommend New TopicsIn this episode of the ASF Podcast, CEO Amanda Moore welcomes Hannah Oppenheim, a neurodevelopmental disability fellow, to discuss the history of disability rights and ableism in medicine. They explore key legislation like Section 504, IDEA, and the ADA, the challenges individuals with disabilities face in healthcare, and the shift toward a social model of disability. Hannah emphasizes the importance of advocacy, inclusion, and ensuring individuals with Angelman syndrome receive the care and support they deserve.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org....
2025-02-2641 min4. vaktin37. Angelman heilkenniÞessi þáttur er í boði:-Góðvildar - Styrktarfélagið Góðvild hefur það markmið að styðja við verkefni sem bæta hag langveikra og fatlaðra barna á Íslandi og fjölskyldna þeirra. Hægt er að styrkja Góðvild og með því er verið að styðja við fjöldann allan af verkefnum sem bæta hag langveikra og fatlaðra barna. godvild.is - Kt. 660117-2020 Reikn. 0301-26-660117-Sjónarhóls - Ráðgjafarmiðstöðin Sjónarhóll er fyrir fjölskyldur barna með sérþarfir. Þjónustan er ókeypis og ekki er þörf á tilvísun. Það eru...
2025-02-1940 min
Rare 5, Rare Spotlights: Explorando enfermedades raras en 5 minutos15 de febrero, día internacional del síndrome AngelmanHoy, 15 de febrero, conmemoramos el Día Internacional del Síndrome de Angelman, una fecha clave para visibilizar esta condición genética rara y promover la investigación y el apoyo a las familias que conviven con ella y en este episodio, entrevistamos al Dr. Alan Cárdenas Conejo, médico genetista adscrito al servicio de Genética Médica de la UMAE Hospital de Pediatría, Centro Médico Nacional Siglo XXI del Instituto Mexicano del Seguro Social en Ciudad de México.El síndrome de Angelman es un trastorno neurogenético causado por la ausenci...
2025-02-1505 minAngelman Syndrome Foundation PodcastAn Interview with "Out of My Mind" Director, Amber SealeyShare Your Feedback or Recommend New TopicsIn this episode of the ASF Podcast, CEO Amanda Moore speaks with filmmaker Amber Sealey about her Disney+ film Out of My Mind, which highlights the journey of a young girl with cerebral palsy. They discuss the importance of disability representation in media, presuming competence in non-verbal individuals, and the realities of caregiving. Amber shares her personal connection to advocacy, the challenges of making the film, and how storytelling can amplify the voices of those with disabilities.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.
2025-02-1126 min
Moms Like Me Podcast by SupportNowNavigating Angelman Syndrome with Amanda Moore
What happens when life takes an unexpected turn? In this heartfelt episode of Moms Like Me, host Jordan Arogeti sits down with Amanda Moore, CEO of the Angelman Syndrome Foundation, to share her incredible journey of adoption, advocacy, and resilience.
Amanda opens up about her son Jackson’s diagnosis with Angelman syndrome, the challenges of raising a child with a rare disease, and how her family found strength, support, and hope. She discusses the critical need for early diagnosis, the power of community, and the life-changing impact of perseverance.
📌 Topics Covered:✔️ Early signs and...
2025-02-1026 minAngelman Syndrome Foundation PodcastGenetics 101Share Your Feedback or Recommend New TopicsIn this episode of the ASF podcast, recorded at the 2024 ASF Family Conference, Dr. Rebecca Burdine unpacks the genetics of Angelman syndrome, focusing on the UBE3A gene and its critical role in the brain. She also discusses current therapeutic advancements that offer hope for improving the lives of those with Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org...
2025-01-2253 min
Discovering Academia#065 - David Segal: Rare Diseases, Angelman Syndrome, and the Power of Gene EditingToday we talk with David Segal, Professor of Biochemistry and Molecular Medicine at the UC Davis School of Medicine. His research focuses on genome engineering and targeted gene regulation for applications in neurological disorders, particularly Angelman Syndrome. In this episode we talk about the main mechanisms and challenges of molecular medicine – from CRISPR and zinc finger proteins to editing methods and financial barriers. Professor Segal explains the causes of Angelman Syndrome and details how the future of molecular medicine may assist in treating many types of rare diseases.
For more information about this episode, see our...
2025-01-141h 09Discovering Academia#065 - David Segal: Rare Diseases, Angelman Syndrome, and the Power of Gene EditingToday we talk with David Segal, Professor of Biochemistry and Molecular Medicine at the UC Davis School of Medicine. His research focuses on genome engineering and targeted gene regulation for applications in neurological disorders, particularly Angelman Syndrome. In this episode we talk about the main mechanisms and challenges of molecular medicine – from CRISPR and zinc finger proteins to editing methods and financial barriers. Professor Segal explains the causes of Angelman Syndrome and details how the future of molecular medicine may assist in treating many types of rare diseases.
For more information about this episode, see our...
2025-01-141h 09Angelman Syndrome Foundation PodcastIntensive Therapy: Bryan LaScala and the NAPA CenterShare Your Feedback or Recommend New TopicsIn this episode, CEO Amanda Moore is joined by Bryan LaScala, CEO of the NAPA Center. Bryan shares the inspiring story of how his mother’s determination to help her son led to the founding of this groundbreaking therapy center. Bryan dives into the benefits of intensive therapy, the individualized approach at NAPA, and how the center supports families navigating complex care journeys. + + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community....
2025-01-0837 minAngelman Syndrome Foundation PodcastEpilepsy in Angelman SyndromeShare Your Feedback or Recommend New TopicsIn this episode, Dr. Mark Nespeca lays the groundwork by identifying and explaining the types of seizures commonly seen in individuals with Angelman syndrome. Dr. Ron Thibert then delves into treatment options and discusses Non-Convulsive Status Epilepticus (NCSE). Dr. Robert Carson wraps up the episode with crucial insights on seizure preparedness and his groundbreaking research on NEM / tremors. You'll gain valuable knowledge and strategies to manage epilepsy effectively.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and...
2024-12-1759 minAngelman Syndrome Foundation PodcastFood is MedicineShare Your Feedback or Recommend New TopicsPeople with Angelman syndrome demonstrate a higher than average response to dietary therapy. This podcast provides a better understanding of what dietary therapy is, what benefits are seen and who benefits most, as well as side effects.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-12-1037 min
Jake's Take with Jacob ElyacharEpisode 335: Drew Angelman RETURNS + TALKS The Challenge Universe (BFANC, AS4 & Battle of the Eras)It is a privilege to welcome back for the fifth time onto The Jake’s Take with Jacob Elyachar Podcast – the one and only Drew Angelman. Drew is the creator and founder of Angelcake Entertainment! Since he last visited the podcast, Drew covered several Challenge spin-offs – The Challenge: World Championship, The Challenge USA: Season Two, and The Challenge All-Stars: Season Four. He also covered The Challenge: Battle for a New Champion and the current season – The Challenge: Battle of the Eras. He also created top moments of the show’s iconic champions, tackling some of the franchise’s b...
2024-12-091h 15Angelman Syndrome Foundation PodcastDecision Fatigue to Peace with Lisa JamiesonShare Your Feedback or Recommend New TopicsAngelman mom, Lisa Jamieson from Walk Right In Ministries, a faith-based organization that supports caregivers, joins CEO Amanda Moore to discuss Lisa's personal experiences as a caregiver and insights on supporting the mental wellbeing of those supporting loved ones with Angelman syndrome.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-11-2642 min
The Autism DadAngelman Syndrome: One Dad’s StoryWelcome to The Autism Dad Podcast! In this episode, I sit down with Jonathon Smith, a dedicated special needs dad, to discuss his parenting journey with a son diagnosed with Angelman Syndrome. Jonathon shares his family's story, their struggles, and the challenges they faced navigating life with a complex genetic disorder. Most inspiringly, he explains how these challenges led to the creation of Safe Place Bedding, a company dedicated to providing safe, comfortable sleeping solutions for special needs individuals.What You’ll Learn in This Episode:- What is Angelman Syndrome?...
2024-11-2033 minAngelman Syndrome Foundation PodcastTravel TipsShare Your Feedback or Recommend New TopicsGuest hosts AJ and Chloe Knouff are joined by Haily Green of Wondermakers Travel. They talk all things travel including planning, special considerations and tips for trips to Disney.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-11-1430 minAngelman Syndrome Foundation PodcastTop 10 Questions With Amanda MooreShare Your Feedback or Recommend New TopicsAmanda Moore, Angelman Syndrome Foundation CEO, shares the top 10 questions she is asked and how she answers those questions.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-10-3035 minAngelman Syndrome Foundation PodcastBehavior and Anxiety in Angelman SyndromeShare Your Feedback or Recommend New TopicsChristopher Keary, MD, Behavioral Director at the MGH Angelman Syndrome Clinic, and Cesar Ochoa-Lubinoff, MD, MPH, ASF Clinic Director at Cedars-Sinai, offer valuable insights on evaluation, management, and recommended treatment options for unique and challenging behaviors in Angelman syndrome.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-10-1648 min
Oklahoma Women Want To KnowAngelman Syndrome: finding a cure is within reachRemi Matheson is a beautiful 8-year-old Owasso girl with a rare genetic mutation called Angelman Syndrome. Remi's parents, Chrysti and Derek Matheson host an annual golf tournament, called the Remi Cup to help raise money for Angelman Syndrome research. The Mathesons talk about the characteristics and early signs of the disorder and tell us all about their little firecracker, Remi. To donate to Angelman Syndrome research and to learn more, visit Remicup.com
2024-10-0929 minAngelman Syndrome Foundation PodcastMiles For Smiles w Deanna McCurdyShare Your Feedback or Recommend New TopicsInspiring mother, advocate and runner, Deanna McCurdy, talks with CEO Amanda Moore about uniting her passion and purpose to create Team Miles for Smiles.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-10-0356 minAngelman Syndrome Foundation PodcastGenotypes: A Conversation with ParentsShare Your Feedback or Recommend New TopicsASF CEO Amanda Moore talks with parents of individuals with AS about the various genotypes and their experiences with how each genotype presents. + + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2024-09-191h 07
What is Trending Today - U.S.Captivating Trends: Taylor Swift, Angelman Syndrome, and Tim Walz's Military ServiceIn the ever-evolving landscape of internet searches, three diverse topics have captivated the public's attention recently: Taylor Swift, Angelman syndrome, and Tim Walz's military service. Each trend reflects distinct aspects of our cultural, health, and political environments, demonstrating the breadth of issues that engage audiences today.Taylor Swift continues to dominate global headlines and internet searches alike. Her recent activities, including releasing music, embarking on tours, and making public appearances, have kept fans and tabloids buzzing. Swift’s knack for connecting with her audience and continuously reinventing her musical style has established her as a cultural icon. Her in...
2024-08-0802 min
Mas Que RarasDesde Colombia: Hablando con Stephanie Azout Chaki sobre el síndrome de Angelman y la fundación FASTStephanie Azout Chaki es la presidenta de FAST Latam, organización dedicada a la terapéutica del síndrome de Angelman en Latinoamérica. Stephanie es diseñadora de profesión y reside en Bogotá, Colombia, junto a su esposo y sus tres hijos. Michelle, su segunda hija, fue diagnosticada con Angelman hace 11 años. Desde entonces Stephanie y su familia han sido activos en la comunidad Angelman y en FAST. En este episodio, conversamos con Stephanie y aprendemos más sobre este grupo dedicado a Latinoamérica, y ella nos cuenta de los programas de apoyo y guía que están...
2024-07-1736 min
Abierto a Mediodía – 999 Valencia RadioInvestigación para el síndrome de AngelmanAbierto a mediodía. VALÈNCIA. Jueves, 4 de Julio de 2024. entrevista a Carlos Ramos y Jessica Reig.
Nos visitan Carlos Ramos y Jessica Reig, padres de una niña, Cristina, que padece síndrome de Angelman. El síndrome de Angelman es una condición de causa genética que afecta al sistema nervioso. Nos contarán su situación y los esfuerzos para conseguir financiación a través de la Fundación FAST, ya que no hay inversión pública en investigar la enfermedad. Han preparado un sorteo solidario, una rifa de 20 camisetas firma...
2024-07-0400 min
Talking With Tech AAC PodcastCaroline Woeber: Supporting AAC Users with Angelman SyndromeThis week, Chris interviews Caroline Woeber! Caroline is an SLP specializing in AAC at Children’s Hospital Colorado, including working at their Angelman/Chromosome 15 Disorder clinic. Caroline shares all about supporting communication and AAC in the hospital environment, training parents and caregivers about AAC, identifying next steps when teaching people with Angelman syndrome to use AAC, and more!
Before the interview, Chris and Rachel answer a fascinating listener question about a complex communicator at their school whose parents want the student to use sign language instead of AAC. However, the school is pushing for AAC onl...
2024-06-291h 13
Rare 5, Rare Spotlights: Explorando enfermedades raras en 5 minutos15 de febrero, día internacional del síndrome AngelmanEn este episodio, entrevistamos al Dr. Alan Cárdenas Conejo, médico genetista adscrito al servicio de Genética Médica de la UMAE Hospital de Pediatría, Centro Médico Nacional Siglo XXI del Instituto Mexicano del Seguro Social en Ciudad de México.El Día Internacional del Síndrome de Angelman se celebra el 15 de febrero de cada año. Este día tiene como objetivo concietizarr sobre el síndrome de Angelman, una enfermedad genética poco común que afecta el sistema nervioso y se caracteriza por retraso en el desarrollo, discapacidad intelectual, problemas de equilibrio...
2024-02-1505 min
Mother TongueAngelman Syndrome Awareness with Rhian AdamsToday’s guest is an incredibly inspiring women both in her parenting life, as well as her fitness. She is a single mum with two children – one of which has a rare genetic condition known as angelman syndrome. On this episode, we discuss her motherhood journey - the highs and the lows plus Rhian shares some insight into life with angelman syndrome, the symptoms and a possible cure. This mama is also a personal trainer - awarded PT of the year in 2018 and 2020, health coach of the year in 2022 and is no stranger to the stage f...
2024-02-1353 min
Just Don't Eff Them UpParenting a Kiddo with Angelman SyndromeA friend of the show, Meghan Edberg, talks to us about parenting her son, William, who is diagnosed with Angelman Syndrome. A rare genetic disorder that affects about 1 in 15,000 people, Angelman Syndrome, can cause delayed development, problems with speech, intellectual disabilities and seizures.
To follow William's story check out his instagram @Will.I.Can_with_angelman and his website www.willican.org
To learn more about Angelman Syndrome and the research being done for a better future check out the Foundation for Angelman Therapeutics (FAST) at www.cureangelman.org
If you are interested in donating on International Angelman Syndrome che...
2024-02-0342 minJust Don't Eff Them UpAngelman SyndromeA friend of the show, Meghan Edberg, talks to us about parenting her son, William, who is diagnosed with Angelman Syndrome. A rare genetic disorder that affects about 1 in 15,000 people, Angelman Syndrome, can cause delayed development, problems with speech, intellectual disabilities and seizures.
To follow William's story check out his instagram @Will.I.Can_with_angelman and his website www.willican.org
To learn more about Angelman Syndrome and the research being done for a better future check out the Foundation for Angelman Therapeutics (FAST) at www.cureangelman.org
If you are in...
2024-02-0242 min
Dad to Dad PodcastDad to Dad 278 - Adam Birchmeier of Muskegon, MI Whose Daughter With Angelman Syndrome, Very Sadly Passed Away In AugustOur guest this week is Adam Birchmeier of Muskegon, MI who is a Business Sales Representative with Access Health and the father of daughter with Angelman Syndrome, who very sadly passed away in August, after a brief illness.Adam and his wife, Nicole, have been married for 4 years and are the proud parents of Maddie who was born in June 2020, was diagnosed with Angelman Syndrome at 18 months and who, very sadly, passed away in August, shortly after her third birthday. We also learn about Maddie's Joy, the blog and podcast Adam created to reflect on the...
2023-11-0353 minAngelman Syndrome Foundation PodcastAdults & Caregiver SupportShare Your Feedback or Recommend New TopicsParent of an 28-year-old daughter with Angelman syndrome, Robin Wilkerson discuss the importance of community and how to support adults.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-09-1835 minAngelman Syndrome Foundation PodcastAn Interview With Angie Kim, Best-Selling AuthorShare Your Feedback or Recommend New TopicsNew York Times best-selling author Angie Kim discusses her new heart-wrenching thriller book "Happiness Falls" and the character Eugene who has Angelman syndrome.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-08-291h 04
Help yourself first aid.Bonus episode with Angie, Henry & Angelman's syndrome.Today we’re joined by Angie, who tells us the story of her lad Henry, who has Angelman’s syndrome – a form of epilepsy.
In this episode, some key take aways are:
• What is epilepsy?
• What causes epilepsy in the Angelman’s syndrome patient?
• What is Angelman’s syndrome?
• How can we recognise when someone is unresponsive and having a seizure?
• Angie tells us of her journey with Henry from birth to now, and how she’s had fantastic help from immediate care specialists, including paramedics, doctors and nurses.
Loo...
2023-08-1512 minAngelman Syndrome Foundation PodcastSeizure Control & Diet in ASShare Your Feedback or Recommend New TopicsDiet is so important to controlling seizures individuals with AS. Learn more about the ketogenic diet from Mass General Hospital dietician Heidi Pfeifer.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-08-0931 minAngelman Syndrome Foundation PodcastFinancial Planning Q&AShare Your Feedback or Recommend New TopicsCaring and planning for the future of a family member with special needs is often overwhelming. Mary Anne Ehlert from Protected Tomorrows answers common financial questions from Angelman families.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-07-251h 34
Pa raro, YoPrograma 2 - Sindrome de AngelmanEl Síndrome de Angelman es una condición neurológica poco común que afecta aproximadamente a 1 de cada 12,000 a 24,000 personas. Fue descrito por primera vez en 1965 por el pediatra británico Harry Angelman.En este episodio, exploraremos más a fondo los aspectos clave del Síndrome de Angelman, incluyendo sus causas, síntomas, diagnóstico, tratamiento y el impacto que tiene en las personas y sus familias.Recuerda seguirnos en Instagram, TikTok y tu plataforma favorita de podcasts.Musicas utilizadas:Storybook by Scott Holmes Music is licensed under a A...
2023-07-2022 minAngelman Syndrome Foundation PodcastAll Things SeizuresShare Your Feedback or Recommend New TopicsDr. Ron Thibert, ASF Clinician at Massachusetts General Hospital, discusses everything families need to know about seizures in Angelman syndrome.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-07-111h 27Angelman Syndrome Foundation PodcastAS Medical Care For All AgesShare Your Feedback or Recommend New TopicsIn this previously recorded conversation, listen to medical experts answer commonly asked questions about medical care.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-06-261h 13Angelman Syndrome Foundation PodcastAngelman DadsShare Your Feedback or Recommend New TopicsFathers discuss everything there is to know about being a dad to a child with Angelman syndrome.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-06-121h 08Angelman Syndrome Foundation PodcastClinical Trials in ASShare Your Feedback or Recommend New TopicsIn this previously recorded conversation, listen to a Q&A moderated by Dr. Elizabeth Jalazo about exciting clinical trial news.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-05-301h 07
Vital ScienceMoving FAST to Treat Angelman SyndromeThe effects of Angelman Syndrome (AS) on young children are debilitating. From an early age, they face an uphill battle with this neurogenetic disease’s unrelenting symptoms, including seizures, cognitive impairments, and loss of motor function. It can also be tough on caretakers – just ask Dr. Allyson Berent and Jennifer Panagoulias. They both have personal connections to this disease, which in Dr. Berent’s case led to her creating the Foundation for Angelman Syndrome Therapeutics (FAST) in 2008. Today, Panagoulias, whose niece has AS, serves as their head of Regulatory and Policy, tasked with the respons...
2023-05-1630 minAngelman Syndrome Foundation PodcastWe Are Single CaregiversShare Your Feedback or Recommend New TopicsTwo single mothers of children with Angelman syndrome discuss what help looks like for them.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-05-1534 minAngelman Syndrome Foundation PodcastAS Clinical Experts PanelShare Your Feedback or Recommend New TopicsIn this previously recorded webinar, listen to an "ask all, tell all" session with four Angelman syndrome clinical experts.+ + +Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2023-05-011h 22
Exklusiv INKLUSIV - Der inklusive Podcast von und mit Fiona FiedlerYvonne Otzelberger (Angelman Verein Österreich) - Exklusiv INKLUSIV #19Heute ist der internationale Angelman-Tag! Der Aktionstag wird jährlich am 15. Februar in Kooperation mit vielen internationalen Angelman-Syndrom Organisationen begangen, um auf den seltenen Gendefekt aufmerksam zu machen.
In einer neuen Folge meines Podcasts spreche ich mit Yvonne Otzelberger. Sie ist Gründerin und Obfrau des Angelman Vereins und Mutter eines betroffenen Sohnes. In einem sehr persönlichen Gespräch teilt sie ihre Geschichte. Sie erzählt von ihrem Umgang mit der schwerwiegenden Diagnose, gibt Einblicke in das Familienleben, spricht über Ängste und Sorgen, und schenkt dabei aber vor allem Zuversicht und Hoffnung.
2023-02-1539 min
Dad to Dad PodcastDad To Dad 239 - Chris Brewster of Waverly, NY Fatherhood Coordinator at Parent2Parent & Father of 3, Including a Son with Angelman SyndromeOur guest this week is Christopher Brewster of Waverly NY. Chris and his wife, Kristen, have been married for six years and are the proud parents of three children: son Bowie (15) who has Angelman Syndrome, daughter Ada (17), and son Seth (26) who has Scleroderma, Short leg syndrome, Autism and more recently is undergoing gender transition.From a professional perspective, Chris is a Community Engagement Manager for the Food Bank of the Southern Tier (Elmira & Corning area). He also works part-time as the Fatherhood Coordinator for Parent to Parent of New York State, connecting fathers of children with...
2023-02-0344 min
Maddie's Joy: An Angelman JourneyEpisode 8: What is Angelman Syndrome?Episode 8 focuses on what Angelman Syndrome is. We go into the genetics of Angelman Syndrome and some common symptoms of Angelman Syndrome. We also discuss how rare Angelman Syndrome is compared to other syndromes.
2023-02-0322 minAngelman Syndrome Foundation PodcastHow Diet Therapy Saved My SonShare Your Feedback or Recommend New TopicsParent Lizzie Sordia describes how the ketogenic diet eventually stopped her son's seizures. Learn more about Diet Therapy: Angelman.org/articles/diet-therapy+ + + Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2022-12-0110 min
LAS PODEROSAS CÉLULAS NKDos hermanas con síndrome de Angelman: informe de una serie de casosKocaoglu Ç. Two sisters with Angelman syndrome: A case series report. J Pediatr Neurosci [serial online] 2017 [cited 2022 Nov 3];12:383-5. Available from: https://www.pediatricneurosciences.com/text.asp?2017/12/4/383/227978
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2022-11-0307 minLAS PODEROSAS CÉLULAS NKSíndrome de AngelmanMadaan M, Mendez MD. Angelman Syndrome. [Updated 2022 Aug 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK560870
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2022-11-0313 minAngelman Syndrome Foundation PodcastNewly Diagnosed 101Share Your Feedback or Recommend New TopicsTwo mothers join Amanda to discuss their newly diagnosed journey and early signs of Angelman syndrome in their children.+ + + Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2022-10-3148 minAngelman Syndrome Foundation PodcastUnderstanding Episodes of MyoclonusShare Your Feedback or Recommend New TopicsASF Clinician Dr. Robert Carson discuss non-epileptic myoclonus, a movement disorder that presents itself with sudden, brief, shock-like jerks in individuals with AS.+ + + Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2022-10-201h 03Angelman Syndrome Foundation PodcastUnderstanding Adults with ASShare Your Feedback or Recommend New TopicsASF CEO Amanda Moore interviews Robin Wilkerson, parent of Paige, a 29-year-old with AS. Diagnosed at age 5, Robin discusses her family's journey and the unique challenges of AS in adulthood.+ + + Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2022-10-1132 minAngelman Syndrome Foundation PodcastUnderstanding The UBE3A GeneShare Your Feedback or Recommend New TopicsASF Clinic Director Christian Hommes and Matt Judson from The Philpot Lab at UNC explain the complexities of UBE3A.* * *Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2022-10-0346 minAngelman Syndrome Foundation PodcastSibling Spotlight: Baden MooreShare Your Feedback or Recommend New TopicsIn Episode 3, ASF CEO Amanda Moore interviews a special guest! Her 7-year-old son Baden explains first-hand what it's like being a twin sibling to his brother Jackson, who has AS.* * *Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.
2022-09-2620 minAngelman Syndrome Foundation PodcastLadder Learning NetworkShare Your Feedback or Recommend New TopicsIn Episode 2, ASF CEO Amanda Moore and ASF Chief Medical Officer Liz Jalazo discuss the importance of clinical care and introduce the LADDER Learning Network. A perfect listen for newly-diagnosed families as well as those who are further along in their journey, learn how to get a plan for clinical care for your loved one with AS.* * *Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram and connect with our community.Find an Angelman Syndrome Foundation...
2022-09-1848 minAngelman Syndrome Foundation PodcastWhat is Angelman syndrome?Share Your Feedback or Recommend New TopicsIn Episode 1 of the ASF Podcast, Amanda Moore, CEO of Angelman Syndrome Foundation, shares her family's diagnosis journey. Amanda's son, Jackson, is 7 years old and was diagnosed at a young age with AS. Amanda shares her personal experience working with doctors on the diagnosis and which ongoing resources have helped her family most.Amanda also defines AS, what causes it and some overall characteristics of the syndrome.* * *Learn more about Angelman Syndrome Foundation at Angelman.org.Follow us on Facebook and Instagram...
2022-08-3020 min
The Silent Why: finding hope in grief and lossLoss 31/101: Loss through parenting a child with Angelman Syndrome: Vlad Korotkov & Irina Karaseva#045. Vlad Korotkov & Irina Karaseva, had the typical dreams of parenting when they got pregnant with their first child in 2019, but sadly this was not going to be their experience.On The Silent Why podcast we're on a mission to open up conversations around loss and grief, to see if hope can be found in 101 different types of loss. Can it be found in the parenting of a child with disabilities?Early on in their parenting journey Vlad & Irina, a Russian married couple from London, had suspicions that everything was not as it should be, and...
2022-08-1655 min
everymumOur life with Angelman Syndrome - Danielle CullinanIn this very special episode Sinead is joined by a mother of 2 Danielle Cullinan to talk about Angelman Syndrome - a very rare genetic disorder that her eldest daughter Clara was born with. In this episode she takes us on an extraordinary journey to a diagnosis, connecting with other families who have a child with Angelman Syndrome, how she had her husband both found different coping strategies and their decision to have another baby. We also talk about the realities of a severely disablied child in a society that isn’t build to supp...
2022-06-111h 12
Diario de Autismo#065 La herramienta CRISPR aumenta los niveles de UBE3A, relacionada con el Síndrome de Angelman, en ratonesUna forma modificada de CRISPR-Cas9 restaura la expresión de UBE3A, el gen mutado en el síndrome de Angelman, sin cortar el ADN, según un nuevo estudio no publicado realizado con ratones y neuronas humanas. Apunta a un enfoque de terapia génica que es potencialmente más seguro que las herramientas CRISPR convencionales que funcionan al romper cadenas de ADN, dicen les investigadores.
Por Niko McCarty para Spectrum.
DOI: https://doi.org/10.53053/BOXX5086
Apoyá el pódcast
2022-05-2706 min
Sendungen aus Kreuztal | NRWisionLokalreport: Angelman-SyndromDas Angelman-Syndrom ist eine genetische Erkrankung. Betroffene Kinder fallen durch ihr häufiges Lachen und ihre besonderen Bewegungen auf. Deswegen nannte man diesen Gendefekt lange "Happy-Puppet-Syndrom". Mutter Mareile Stücher will die Krankheit im Siegerland bekannter machen. Ihre Tochter Mia leidet unter dem Angelman-Syndrom. Im Gespräch mit "Lokalreport"-Moderatorin Ulla Schreiber berichtet Mareile Stücher über die Symptome der Erkrankung. Schon als Baby bekommt ihre Tochter Mia die Diagnose. Betroffene brauchen oft intensive Unterstützung - ein Leben lang. Mareile Stücher spricht über den Alltag mit jemandem, der vom Angelman-Syndrom betroffen ist.
2022-05-2455 minDiario de Autismo#044 Síndrome de AngelmanQué es el Sindrome de Angelman y su relación con el autismo. Causas, formas en que se estudia, tratamientos.
De la Wiki de Spectrum News.
Apoyá el pódcast
2022-05-0506 min
Revista Manifiesto Atípico y Diverso15 de febrero día Internacional del Síndrome de Angelmanhttps://instagram.com/sonrisasdeangelman?utm_medium=copy_link https://instagram.com/sindromedeangelmanuruguay?utm_medium=copy_link https://instagram.com/sindrome.angelman?utm_medium=copy_link https://www.ivami.com/es/pruebas-geneticas-mutaciones-de-genes-humanos-enfermedades-neoplasias-y-farmacogenetica/1039-pruebas-geneticas-angelman-sindrome-de-angelman-syndrome-genes-oca2-y-ube3a
2022-02-1507 min
13plusRostoucí inflace, jmenování M. Koudelky ředitelem BIS a Angelmanův syndromHosty relace jsou předsedkyně Národní rozpočtové rady Eva Zamrazilová, redaktor týdeníku Respekt Jaroslav Spurný a Dagmar Kozáková, předsedkyně spolku ANGELMAN CZ. Moderuje Ondřej Havlíček.
2022-02-1527 min
Podcast Cruzamento33: Catarina e Manuel Costa Duarte: Angelman, Doenças Raras e a Importância Da InclusãoNeste episódio do Podcast CRUZAMENTO, André Correia e Daniel Guedelha conversam com Catarina Costa Duarte e Manuel Costa Duarte sobre a Síndrome de Angelman, do importante papel que a Associação tem em Portugal e de que forma é que a sociedade pode melhorar a integração destas pessoas.
Catarina Costa Duarte, mãe de 4, um deles com Síndrome de Angelman. Para além da dedicação à família e ao trabalho, disponibiliza o tempo livre (que não tem) às associações e causas em que acredita. É associada fundadora da ANGEL – Associação Síndrome de Angelman Portug...
2022-02-1520 minPodcast Cruzamento33: Catarina e Manuel Costa Duarte: Angelman, Doenças Raras e a Importância Da InclusãoNeste episódio do Podcast CRUZAMENTO, André Correia e Daniel Guedelha conversam com Catarina Costa Duarte e Manuel Costa Duarte sobre a Síndrome de Angelman, do importante papel que a Associação tem em Portugal e de que forma é que a sociedade pode melhorar a integração destas pessoas.
Catarina Costa Duarte, mãe de 4, um deles com Síndrome de Angelman. Para além da dedicação à família e ao trabalho, disponibiliza o tempo livre (que não tem) às associações e causas em que acredita. É associada fundadora da ANGEL – Associação Síndrome de Angelman Portug...
2022-02-1520 min
Podcast Cruzamento33: Catarina e Manuel Costa Duarte: Angelman, Doenças Raras e a Importância Da InclusãoNeste episódio do Podcast CRUZAMENTO, André Correia e Daniel Guedelha conversam com Catarina Costa Duarte e Manuel Costa Duarte sobre a síndrome de Angelman, do importante papel que a Associação tem em Portugal e de que forma é que a sociedade pode melhorar a integração destas pessoas. Catarina Costa Duarte, mãe de 4, um deles com Síndrome de Angelman. Para além da dedicação à família e ao trabalho, disponibiliza o tempo livre (que não tem) às associações e causas em que acredita. É associada fundadora da ANGEL – Associação Síndrome de Angelman Portugal e, desd...
2022-02-1520 min
Dad to Dad PodcastDad to Dad 185 - Lenn Boston of Kalamazoo, MI Retired U.S. Navy Chief Petty Officer, Father of Four Including A Child With Angelman SyndromeOur guest this week is Leonard Boston of Kalamazoo, MI, a retired U.S. Navy Chief Petty Officer, real estate agent, board member of Parent To Parent (P2P) USA, and father of four, including a daughter with Angelman Syndrome. Lenn and his wife, LaTrieva, have been married for 13 years and are the proud parents of four children: Kenyana (31), Ashante (28), Maleek (26) and Chloe(11), who was diagnosed with Angelman Syndrome, a genetic disorder that mainly effects the nervous system. After serving 20 years in the Navy, Lenn became a real estate agent and also serves on the board...
2022-01-2843 min
MèresFlore, « je veux dire au monde qu’on peut être heureuse avec un enfant différent » - Vivre avec le syndrome d’AngelmanFlore est infirmière libérale, prendre soin des autres est dans ses cordes, elle aime ça et ne pourrait pas se passer de son métier. Elle a trois enfants et travaille 7 jours sur 7, une semaine sur deux : elle est organisée, équilibrée et heureuse. Dans cette famille heureuse, il y a Ambre, 6 ans, une petite fille différente de sa grande sœur et de son petit frère. Il a fallu à Flore et son mari 4 ans pour connaître le nom de sa maladie.Ambre est atteinte du syndrome d’Angelman, une anomalie génétique rare...
2022-01-1748 min
We Saved You a SeatRARE Diagnosis: Angelman Syndrome, Episode 03Our third and final episode with Chelsea gives us a glimpse into the relationship Kenna has with her brother as well as discusses a couple of additional medical challenges Kenna has faced the past few months.
For those wishing to follow along in Kenna's journey, feel free to join her Facebook page: Kenna's Journey
Thank you Chelsea for sharing Kenna. You brought awareness, education, conversation and support to many who needed to hear your words and thoughts surrounding Angelman Syndrome.
#AngelmanSyndrome #TonicClonicSeizure #HenochSchonleinPurpura #HSP #JuvenileArthritis
2021-08-1344 minWe Saved You a SeatRARE Diagnosis: Angelman Syndrome, Episode 02Join us today as we continue our conversation with Chelsea. She provides us with information about Angelman Syndrome from a parent perspective and shares with us some wonderful resources which have been extremely helpful to/and for her and her family.
We also hear from Chelsea about some unique to Kenna health concerns that have plagued her for several months. Chelsea describes what it was like trying to be the advocate Kenna needed.
Resources Mentioned:
FAST: Foundation for Angelman Syndrome Therapeutics: (https://cureangelman.org/)
Angelman Syndrome Foundation: (https...
2021-08-1247 min
HealthUPop Culture RX: What is Angelman Syndrome?Actor Colin Farrell recently filed for conservatorship of his teenage son with Angelman Syndrome. We connect with Dr. Michelle Sirak to talk about what Angelman Syndrome is and if a conservatorship is the right move for this family.
2021-06-0130 min
KALE NAGUSIAAngelman Sindromearen Nazioarteko Eguna daOtsailaren 15a, Angelman Sindromearen eguna. Gaixotasun arraro honek egun, Euskadin, 30 pertsona baino gutxiagorengan dauka eragina. Gaixotasun ezohikoekin gertatzen dena da ikusgaitasunaren beharra dutela, eta Gipuzkoako Kale Nagusian, helburu horrekin hitz egin dugu Joseba Antxustegirekin, Angelman Sindromearen Elkarteko presidentearekin. Joseba, gainera, sindromea duen gazte baten aita ere bada eta esplikatu egin digu nolakoa den bere semearen, eta beste haur askoren, egunerokotasuna.
2021-02-1514 min
PediatricsByDrAnandANGELMAN SYNDROME / UNIPARENTAL DISOMY / IMPORTANT FEATURESIn this audio I have explained a quick mnemonic of ANGELMAN syndrome - you will surely like it :)
2020-12-1702 min
The Zero to Finals Medical Revision PodcastAngelman SyndromeThis episode covers Angelman syndrome.Written notes can be found at https://zerotofinals.com/paediatrics/genetics/angelman/ or in the genetics section in the Zero to Finals paediatrics book.The audio in the episode was expertly edited by Harry Watchman.
2020-11-1603 min
Jake's Take with Jacob ElyacharSpecial Edition #3: Drew Angelman RETURNS & TALKS 'Big Brother 22' & 'The Challenge 36'I am so happy that my friend, Angelcake Entertainment’s Drew Angelman, returned to The Jake’s Take with Jacob Elyachar Podcast. Since the last time Drew Angelman appeared on the podcast, he covered The Challenge: Total Madness. He also strengthened the Angelcake Entertainment channel by postings various videos that range from Mount Lavins (named after The Challenge’s longtime host T.J. Lavin) and several top ten videos. He is inching closer to 10,000 YouTube subscribers. In this edition of The Jake’s Take with Jacob Elyachar Podcast, Drew Angelman and I unpack Big Brother 22. We also tal...
2020-11-0247 min
Dad to Dad PodcastDad to Dad 114 - SEND International Missionary Nathan Woerner And His Daughter with Angelman SyndromeOn this Special Fathers Network Dad to Dad Podcast, we hear from Nathan Woerner, a missionary with SEND international and a father of two children including Ada. (2), who has Angelman Syndrome. Nathan tells of his family's travels to Japan and the differences between American and Japanese healthcare. That’s all on this Special Fathers Network Dad to Dad PodcastShow Links: SEND International – https://send.org/ Angelman’s Syndrome - https://www.angelman.orgFAST (Foundation for Angelman Syndrome Therapeutics - https://cureangelman.orgFind out about the Special Fathers Network at: https...
2020-09-0438 min
Jake's Take with Jacob ElyacharEpisode #20: Angelman Entertainment's Drew Angelman Visits!Content creator and Angelcake Entertainment host Drew Angelman made his 'Jake's Take' debut. We talked about 'The Challenge: Total Madness' and his content creation process. 'Jake's Take' would like to thank Josh Wilson for editing this episode.Become a supporter of this podcast: https://www.spreaker.com/podcast/jake-s-take-with-jacob-elyachar--4112003/support.
2020-03-191h 03
Truth In BootsEp. 16 Angelman Syndrome Part 1: How to be Supportive of Your FriendYou’ve got a friend or neighbor who has a child with special needs, but honestly, you just have no idea how to interact with her or her kid. What do you say? What do you do? What is her life like each day? In this episode I chat with my friend Hannah Black about her son Benjamin who has Angelman Syndrome. She shares her heart about some of the challenges that she, Benjamin, and her family face each day, and she shares some tips on just how you can be supportive of someone with a different needs child....
2020-02-1544 min