Shows
The Galactosemia PodcastRecapping Our Tour of a Gene Therapy Lab - with Jamie HiegelIn this episode, Ryan and Jamie Hiegel recap their experience of getting invited to tour Catalent, a gene therapy lab. We were invited by Bridge Bio, a company currently working on gene therapy targeted at those with galactosemia. We discuss the relationship between BridgeBio, Gondola BIo, and catalent, and we break down our evolving (and sometimes confused) understanding of how gene therapy works. Jamie shares his perspective as an adult living with galactosemia, including why he would be first in line to volunteer for a future clinical trial. We also dive into Jamie’s recent honeymoon in the Galapagos an...2025-07-041h 04The Galactosemia PodcastReading Test Results: Feat. Dr. Michael Gambello & Dr. Tricia HallIn this episode, Ryan sits down with two of the top experts in the field to break down what galactosemia test results actually mean. Joining the show are Dr. Tricia Hall, a biochemical genetics lab director at Mayo Clinic who oversees and signs out galactosemia lab results, and Dr. Michael Gambello, a clinical geneticist at Emory University with decades of experience helping families understand metabolic diagnoses. Together, they explain GAL-1P, gene variants like Q188R and L195P, newborn screening false positives, and how to actually read a test result from start to finish.thegalactosemiapodcast.com – su...2025-06-131h 23The Galactosemia PodcastSpeech Therapist & Galactosemia Parent: Feat. Zara & Fin BettsIn this episode Ryan sits down with Zara Betts, a seasoned speech and language therapist, mother of two boys with classic galactosemia, and a powerful voice for early intervention. Joining her is her 12-year-old son Fin, who offers his own thoughtful, candid perspective on growing up with the condition.thegalactosemiapodcast.com – support the show; ad-free and early access episodesLinks & Resources Mentioned:Fin’s YouTube Channel: https://www.youtube.com/@huskygamer16NYT Gene Therapy: https://www.nytimes.com/2025/05/15/health/gene-editing-personalized-rare-disorders.htmlGuest Bio:Zara Betts is a UK-b...2025-05-301h 02The Galactosemia PodcastThe Voice of the Patient Report: PFDD MeetingIn this week’s episode we look back at the PFDD meeting that led to the Voice of The Patient Report, a landmark document in the fight for better treatment options for those living with Classic Galactosemiathegalactosemiapodcast.com – support the show; ad-free and early access episodesWatch the full PFDD meeting or download the VOP Report here: https://rarediseases.org/externally-led-patient-focused-drug-development-meeting-for-galactosemia/00:00 – Introduction04:00 – Welcome from NORD and the Galactosemia Foundation05:00 – A History of the Galactosemia Foundation06:00 – Defining “Unmet Needs” for Classic Galactosemia07:00 – Clinical Overview...2025-05-161h 37The Galactosemia PodcastThe Science Behind Babbling with Dr. Beate PeterIn this episode, we dive deep into the groundbreaking science behind Babble Bootcamp, a pioneering early intervention program for children at risk of severe speech disorders. We talked to Dr. Beate Peter: geneticist, speech-language researcher, and co-creator of Babble Bootcamp, to explore how her work is transforming outcomes for children with galactosemia, Down syndrome, and other early-identified developmental risks.thegalactosemiapodcast.com – support the show; ad-free and early access episodesLinks & Resources Mentioned:Babble Bootcamp Online Course: https://www.northernspeech.com/early-intervention/babble-boot-camp-basic-training/Guest Bio:About Dr. Beate Peter...2025-05-081h 08The Galactosemia PodcastPrimary Ovarian Insufficiency & Purple Sweet Potatoes with Dr. Synneva Hagen LillevikIn this episode of The Galactosemia Podcast, we’re joined by Dr. Synneva Hagen Lillevik, a registered dietitian and researcher, to explore her groundbreaking work on the potential benefits of purple sweet potatoes in treating Classic Galactosemia. Dr. Hagen Lillevik shares insights from her recent studies, offering hope and new directions for dietary management of this rare condition.thegalactosemiapodcast.com – support the show; ad-free and early access episodesLinks & Resources Mentioned:Purple Sweet Potato Study - https://www.mdpi.com/1422-0067/23/15/8654Guest Bio – Dr. Synnev...2025-05-011h 12The Galactosemia PodcastUnderstanding the Galactosemia Diet with Dr. Sandy Van CalcarIn this episode of The Galactosemia Podcast, Ryan sits down with Dr. Sandy Van Calcar—registered dietitian, researcher, and one of the leading experts on dietary management of classic galactosemia. From growing up on a dairy farm to leading research that shaped today’s international guidelines, Dr. Van Calcar brings decades of experience and clarity to a topic that can be overwhelming for new families.Together, they dive deep into the science and practical realities of managing the galactosemia diet, breaking down essential concepts like endogenous galactose production, free vs. bound galactose in food, and why some aged...2025-04-171h 20
SCREAM with Ryan C. Showers209 - Jill Roberts Tribute (Scream 4 Anniversary)Welcome to Jill’s America! On April 15, 2011, Scream 4 released into theaters and Jill Roberts shocked the hearts and minds of horror moviegoers. Today, April 15, 2025, Ryan and the Patreon community celebrate Jill Roberts as one of the best (if not the definitive best) Ghostface killers in the history of the SCREAM franchise. Subscribe on Patreon.com/screamwithrcs Introduction Why We Love Jill Roberts “The Last Great American Dynasty” The Jill Roberts Tribute Find us on Instagram, Facebook, X, BlueSky, TikTok, and Youtube. Host: @ScreamWithRCS Editor: @albertmpadilla Producer: @ninnetimes @squirrelandspud9 Graphic Design: @joneshiphop @tjonesfilms Taylor Swift Song o...2025-04-151h 36
Let's Talk BethlehemReimagining Healthcare in Bethlehem with Dr. Mark & Dr. Jill DeVries | Ep. 10In this episode of Let’s Talk Bethlehem, we sit down with the dynamic duo behind Bethlehem Direct Care—Dr. Mark and Dr. Jill DeVries. Located right across from the post office, their direct primary care (DPC) model is redefining how healthcare is delivered in our community.We talk about why they left the insurance-based system, how they balance life as doctors and business owners, and what it means to deliver truly personalized care. Whether you're curious about DPC or just want to hear from two passionate locals making a real impact—this episode is for you.🎧...2025-04-1051 minThe Galactosemia PodcastGLOW for Galactosemia 2025 feat. Jamie HeigelIn this episode of The Galactosemia Podcast, we sit down with Jamie Heigel, a high school science teacher, former All-American track athlete, and race director for the 2025 GLOW for Galactosemia fundraiser. Jamie was born with classic galactosemia and shares how the condition has shaped—but not defined—his life.Jamie walks us through his early experiences with speech and learning delays, the incredible support from his parents and tutors, and how galactosemia has influenced his discipline in academics and athletics. He opens up about the challenge of developing epilepsy during college, how medication impacted his emotions, and how...2025-04-101h 21The Galactosemia PodcastWhen Every Day is Advocacy feat. Gillian SapiaIn this episode we sit down with Gillian Sapia, a registered nurse, rare disease advocate, and mom to Penelope, who lives with classic galactosemia. Gillian leads advocacy efforts for the Galactosemia Foundation and works closely with the Haystack Project and EveryLife Foundation to represent rare disease families before the FDA and Congress.Gillian shares her personal journey: what life was like before Penelope’s birth, the trauma of Penelope’s metabolic crisis, and how she navigated postpartum depression and grief while learning to advocate for her daughter. She opens up about the complexities of raising a child with...2025-04-031h 24The Galactosemia PodcastNavigating Life and Fundraising for Galactosemia – Feat. Brittany CudziloIn this episode of The Galactosemia Podcast, we sit down with Britt Cudzilo, mother of four, Vice President of the Galactosemia Foundation, and founder of the annual GLOW fundraiser. Two of Britt’s daughters have classic galactosemia. Britt shares the emotional journeys of both diagnoses, the stark differences in how galactosemia has affected each child, and how that led her to build one of the community’s most impactful fundraisers.She opens up about the traumatic NICU experience with her daughter Ansel, how she balanced care for a newborn with two other young children at home, and the...2025-03-261h 21The Galactosemia PodcastA Delayed Diagnosis & A Rare Complication - Feat. Becca Jonesthegalactosemiapodcast.com - support the show; ad-free and early access episodesTo contribute to the new parent episode, send an email to thegalactosemiapodcast@gmail.com Details: Record a video in a quiet room, keep it under three minutes. Include your name, your relationship to galactosemia, and your message to a parent that has just received a new galactosemia diagnosis. Thought starters: What advice/words of comfort or wisdom would you give to a parent that just received a galactosemia diagnosis? Links & Resources Mentioned:Galactosaemia Support Group UK: galactosaemia.org...2025-03-121h 19The Galactosemia PodcastNew Treatments, Big Questions: What’s next for Galactosemia? Feat. Dr. Estela Rubio Gozalbothegalactosemiapodcast.com - support the show; ad-free and early access episodesTo contribute to the new parent episode, send an email to thegalactosemiapodcast@gmail.com Details: Video recording in a quiet room, under three minutes, your message to a parent that has just received a new galactosemia diagnosis. Links & Resources Mentioned:Recent Research on Galactosemia Therapies: https://onlinelibrary.wiley.com/doi/10.1002/jimd.70013GLOW for Galactosemia - glowforgalactosemia.orgIn this episode, Dr. Estela Rubio-Gozalbo, a leading expert in pediatric metabolic diseases and a driving force behind the Ga...2025-03-051h 14The Galactosemia PodcastBabble Bootcamp: Speech Support & Early Intervention feat. Dr. Nancy Potterthegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Babble Bootcamp - https://www.northernspeech.com/competency-courses/babble-boot-camp-basic-training/Apraxia Kids Foundation - Apraxiakids.comGLOW for Galactosemia - glowforgalactosemia.orgIn this episode, we speak with Dr. Nancy Potter, speech-language pathologist and creator of Babble Boot Camp, the world’s first early speech intervention program designed for infants at risk for speech and language delays, including children with galactosemia. Dr. Potter shares her journey from driving cross-country to study childhood apraxia of speech to le...2025-02-261h 24The Galactosemia PodcastThe Battle for NIH Funding: Impact on Galactosemia Researchthegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Find your senators & representatives: https://www.congress.gov/members/find-your-member NIH Budget Cut Order: https://grants.nih.gov/grants/guide/notice-files/NOT-OD-25-068.htmlIn this episode, we sit down with Dr. Judith Friedovich-Keil (Emory University), Dr. Nancy Potter (Washington State University, retired), and Dr. Beata Peter (Arizona State University) to discuss the recent executive order cutting NIH funding and how it directly affects medical research and the galactosemia community. We explore the real-world impact of capping i...2025-02-1955 min
The Seder-Skier PodcastBuildup 2 Da Birkie: Jill SonnesynWe cap off our American Birkebeiner podcast story series with Jill Sonnesyn, the mother of four-time Birkie champ and World Cup skier Alayna Sonnesyn. Get pumped for Saturday people!Our supporters:EnjoyWinterAtomicSporthillBuildup 2 Da Birkie episodesPart 1: Peter GebhardtPart 2: Willson MoorePart 3: Barbara ZellmerPart 4: Dan Mitchell2025-02-1744 minThe Galactosemia PodcastIEPs and 504s: Understanding Educational Support ft. Dr. Karolyn Maurerthegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Individuals with Disabilities Education Improvement Act (IDEA)Every Student Succeeds ActSection 504 of the Rehabilitation ActIn this episode, we sit down with Dr. Karolyn Mauer, an expert in special education, to break down the educational landscape for children with galactosemia. Dr. Mauer explains everything from early interventions to transition services, helping parents understand their rights and the supports available through the public education system. This conversation demystifies special education terminology and provides practical guidance...2025-02-131h 18The Galactosemia PodcastThe Road to a Cure ft. Dr. Gerard Berrythegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Galactosemia Foundation: galactosemia.orgDr. Berry’s Paper “Is prenatal myo-inositol deficiency a mechanism of CNS injury in galactosemia?” Link: https://drive.google.com/file/d/1nfWpURDtYK619CZbMHL0FrsHpTlyodW7/view?usp=sharingGrant Abstract “Optimal Window of Opportunity for Granulosa Cell Gene Therapy in Galactosemia”: https://reporter.nih.gov/search/-xJ3CNT65k68090tWRqEwQ/project-details/10787066#similar-ProjectsTo participate in Dr. Berry’s long-term study on galactosemia outcomes, email: gerard.berry@childrens.harvard.eduIn this epis...2025-02-051h 50
From the Spectrum: Finding Superpowers with AutismJill Escher: Understanding the Rates and Causes of AutismIn this episode, we explore the intricate world of autism research with Jill Escher, a dedicated philanthropist, lawyer, and parent to two Autistic young adults. Jill's journey into Autism advocacy was sparked by her children's diagnoses, with no prior family history, leading her to significant roles like president of the National Council on Severe Autism and leadership at the Autism Society in the San Francisco Bay Area. Through the Escher Fund for Autism, she examines the causes beyond genetics, investigating how environmental and biological factors might alter gene expression, contributing to Autism's heritability.Jill challenges the conventional...2025-02-0354 minThe Galactosemia PodcastRed Stickers, Green Stickers: A Life with Galactosemia ft. Keith Topperthegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Galactosemia Foundation: galactosemia.orgFoundation Newsletter Signup: galactosemia.org/newsletterGalactosemia Discussion Group Facebook: https://www.facebook.com/groups/183815918306215Food and Drug Law Journal Article: "Vegan Dairy: How FDA Can Avoid Crying Over Spilled [Cow-Less] Milk": https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4586018In this episode, we sit down with Keith Topper, a board member of the Galactosemia Foundation and someone who has lived with galactosemia for 27 years. As a recent...2025-01-291h 14The Galactosemia PodcastInside a Galactosemia Research Lab - ft. Dr. Judith Fridovich-Keilthegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Check Rare Channel Video: https://youtu.be/baG02cOV7KQ?si=QjtM2DpU4uxc4UQwContact Information for Dr. Judy’s Research Participation: jfridov@emory.eduResearch Paper - “Rigor of non-dairy galactose restriction in early childhood, measured by retrospective survey, does not associate with severity of five long-term outcomes quantified in 231 children and adults with classic galactosemia”: https://pmc.ncbi.nlm.nih.gov/articles/PMC5656392/pdf/nihms913930.pdfIn this inaugural episode, we sit down w...2025-01-221h 41
Hey Docs!2024 Highlights & Future Trends: Insights from Ryan Moynihan, CEO of Gaidge2024 Highlights & Future Trends: Insights from Ryan Moynihan, CEO of Gaidge Ryan Moynihan shares insights on key data from 2024, highlighting growth trends in orthodontics. Connect With Our AdvertisersGreyFinch - https://greyfinch.com/jillallen/A-Dec - https://bit.ly/3ZtGyRFSmileSuite - http://getsmilesuite.com/ Summary In this conversation, Ryan Moynihan discusses his journey in the orthodontic industry, the state of the market in 2024, key dat...2025-01-1643 minThe Galactosemia PodcastWelcome to The Galactosemia PodcastComing Soon. A Podcast about Galactosemia2024-12-2002 min
The Championship CornerJill Wilson: LSU VolleyballJill Wilson is the assistant volleyball coach at LSU.2024-10-1153 min
Hub of Junior Golf PodcastHub of Junior Golf Podcast Episode 60: Jill TrujilloHead Coach Jill Trujillo of University of New Mexico Women's Golf calls in to share a part of her story surrounding golf which starts as a player and now coach, she gives her methods to recruiting and building a culture of success over her 18-year tenure with The Lobos.Have Questions? We would love to hear from you! Send us an email at Hubofjuniorgolfpod@gmail.com or leave a comment in the comment section to potentially have your question answered on the next Podcast Viewer Question & Answer!Junior Golf Hub: https: //app.juniorgolfhub.com...2024-09-0346 min
The ALL NEW Big Wakeup Call with Ryan GatenbyJill TwissSend us a textEmmy Award-winning comedy writer Jill Twiss ("Last Week Tonight with John Oliver") returns to the show for a lively chat about her book "Major Makes History." (From September 28, 2021)2024-08-1608 min
Hair HeroConfessions of a Celebrity Super-Stylist (w/ Jill Buck)Send us a textWhat does it take to go from working in a city like Las Vegas to becoming one of LA's top celebrity hairstylists? We sat down with Jill Buck, renowned for her impeccable styling at Nine Zero One salon and her transformative journey in the world of high-profile beauty. Jill shares her path to success, the trials and triumphs she faced, and the invaluable role her friend and business partner, Rihanna Capri, played in her career. We kick off with a nostalgic recount of our first meeting and a particularly memorable hair highlighting session...2024-08-0634 min