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Zebra Developers Podcasts

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Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions ...
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Exploring the wonderful world of quality footwear, how it’s made, and all the things we love about it. Check out Stitchdown.com for shoe and boot reviews, interviews with industry titans, profiles, release info, and more.
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Talking about all the different things that 'digital' means in the arts, culture and heritage sectors. Tales of success and failure, interrogating the shiny new things and looking at what works (or not) and why, Interviews with digital folks working across the sector and beyond, in-house, consultants, funders, and more.
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Big Life Kids Podcast

Big Life Journal

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The Big Life Kids podcast teaches children to stay resilient, believe in themselves, and face life's challenges with confidence! In each episode, Zara and Leo travel the world to discover the living heroes that are making a difference in the world today. Each episode is reviewed and approved by a licensed therapist to ensure that the social-emotional learning and growth mindset lessons covered on this children's podcast are science-backed and accurate. Ideal for children ages 5-10. The podca ...
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The Quantum Alchemist Master podcast encourages the listeners to Alchemize their life by looking within. It captures conversations exploring our human existence, and beyond… Focusing on Existentialism, Spirituality, The Hero’s Journey, & Multidimensional Development: A Philosophy of Freedom and Connection. Becoming, expanding our awareness and consciousness through intentional acts of creation and dialogue. Every conversation is a chance to empower one another, sharing perspectives that shap ...
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Ben Templeton is a writer, creative director and facilitator in the field of games and playful technology. For almost 20 years Ben has helped organisations around the world create fun ways of bringing audiences together to interact with art, culture and science. The Robin Hood Experience at Nottingham Castle is a series of immersive arcade games in…
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In part two of a tag-team with the Full Grain Podcast, the ever-handsome/charming Phil Kalas grills Ben on what to expect at Stitchdown's Boot Camp Chicago 2025 mega-expo and footwear-loving community epicenter this November. Japanese and Indonesian boot brands? Tanneries galore? Truly excellent women's footwear? The world's best care products? Red…
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A great conversation with Paula Bray. Paula is Chief Digital Officer at State Library Victoria in Melbourne. Over the last twenty years Paula has held digital leadership roles at organisations including the State Library of NSW, Powerhouse Museum, Art Gallery of NSW and the Australian National Maritime Museum. Innovation and experimentation runs th…
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Send us a text In this episode of Rare Connection, I talk with Jillian Kavanagh, a nurse practitioner and parent to Ellie, who was diagnosed with Okur-Chung Neurodevelopmental Syndrome (OCNDS) at age 4. With only about 300 known cases worldwide, OCNDS is an ultra-rare genetic condition caused by variants in the CSNK2A1 gene. Jillian shares the chal…
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A chat with New York-based creative director and choreographer, Brandon Powers. Brandon works with technology to create experiences across physical and virtual spaces. We talked about his early experiences with technology, inter-disciplinary teams, the various ways that technology and virtual spaces can enhance and extend experiences for both artis…
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Last week we had our Stitchdown community's first gathering at the new Viberg NYC store—an honestly fabulous-looking little shop in Manhattan’s Nolita neighborhood that’s full of Viberg’s core classic product like stitchdown 2030 and 310 last service boots, but also the loafers and monk straps and split-toe derbies that represent a wholly new—and o…
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FREE Shoecast Bonus Episode—we've got plenty more for Stitchdown Premium subsribers Jason Pecarich of Division Road and Motiv/Arch Support Project co-founder Samuel Wei came on to discuss ASP's legitimately unique approach to footwear, how Motiv broke through Division Road’s no-China policy, and how Chinese customers are finding themselves more dra…
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Send us a text In this episode of Rare Connection, Joanna speaks with Liz, mother of Stephanie, about the ultra-rare IRF2BPL genetic disorder—also known as NEDAMSS—and the groundbreaking milestone of the first-ever IRF2BPL gene replacement therapy. We discuss what this means for the rare disease community, the hope it brings to families, and the pa…
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Send us a text Imagine discovering that a life-saving treatment for your rare condition exists — but you can’t get it because it’s not available or affordable in your country. That’s the reality for countless families around the world. In this global episode of Rare Connection, host Joanna Ball sits down with Aayush Goyal, founder of MedsPartner, a…
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It’s not a stretch to say there is no quality footwear culture quite like Japan’s. But WHY does the Japanese passion for making and wearing great boot and shoes exist? Well, I had to go to Tokyo to find out. As the final piece of our five-part Sole Searching: Tokyo YouTube series, I sat down with Michiya Suzuki—ex-Red Wing Japan GM and co-founder o…
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Send us a text What’s the difference between palliative care and hospice? Why is palliative care still misunderstood—and how can it support people with cancer, rare diseases, and other serious conditions long before end-of-life? In this powerful episode of Rare Connection, host Joanna Ball welcomes Ann, a licensed psychotherapist, breast cancer sur…
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Send us a text In this powerful episode of Rare Connection, host Joanna Ball sits down with special needs mom and author Keyundra, who shares the emotional and medical journey of her son Zaire — a child living with multiple rare conditions, including: 🫁 Laryngomalacia – a rare airway disorder 🦠 Neutropenia – a rare immune disorder 🧬 TNRC6B gene mut…
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Send us a text In this episode of Rare Connection, host Joanna speaks with Stephanie from the EveryLife Foundation for Rare Diseases, who shares her journey living with Idiopathic Intracranial Hypertension (IIH)—a rare neurological disorder involving increased pressure around the brain with no detectable cause. Stephanie opens up about the long pat…
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A conversation recorded in-person (hurray!) with the BFI's Exec Director of Technology and Digital Transformation, Neil Williams. Neil writes a regular 'fortnight notes' post on his blog, which you can find here neilojwilliams.netBy Digital Works
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The Iron Snail, aka Michael Kristy, is one of my favorite YouTube inhabitants, thanks to his legitimately unique approach to reviewing, historicizing, and manufacturing crazily high-quality footwear and clothing. I sat down with Michael to chat about his favorite historical nuggets from the footwear he's covered, how he manages to deliver accurate …
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Send us a text In this powerful episode of Rare Connection, we meet Paul, the president of Cure CLCN6 and the father of Paxton, a young boy diagnosed with an ultra-rare visit mutation on the CLCN6 gene. Paxton’s journey began with developmental delays and years of unanswered questions. After extensive genetic testing, his family finally received a …
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Send us a text In this episode of Rare Connection, host Joanna speaks with Regina, a sarcoidosis patient, author, and creative advocate who’s transforming her personal health journey into a source of awareness and empowerment. After her sarcoidosis diagnosis, Regina launched UniquelySarc, a handmade earring line dedicated to raising sarcoidosis awa…
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Send us a text In this special Rare Connection Live episode, host Joannal celebrates 2 years of amplifying rare voices by welcoming Serena, a rare disease advocate and parent from New Zealand. Serena’s daughter lives with GLUT1 Deficiency Syndrome, a rare metabolic disorder that impairs glucose transport to the brain — leading to seizures and neuro…
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Since 1986, SB Foot Tanning Company is most known as the tannery owned by Red Wing, and with good reason: every bit of leather used on Red Wing Heritage footwear is developed and made by SB Foot just a few miles from Red Wing’s US manufacturing facility. But the tannery itself and its relationship with Red Wing stretch much further back—to the late…
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No conversation about the all-time great women's shoe designers is complete without a very long segue into Stuart Weitzman. Born into a shoemaking family who manufactured for decades in longtime US shoemaking hub Haverhill, Massachusetts, Weitzman quickly established himself as the rare shoemaker to both the stars AND literally any woman who just w…
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A wide-ranging chat with Tash Willcocks (Head of Learning Design at TPX Impact) on organisational culture, leadership, and how to deal with change and uncertainty. Tash mentioned a whole load of ideas, articles, books, and thinkers - a few of which I've linked to below: Tash's Medium lives here: https://medium.com/@tash-willcocks This is the first …
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Send us a text In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's multiple conditions impact their daily life, and how she balances caregiving with her work in early chil…
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I had an absolute gas with Dave Mills of New River Boot, and Dave Corey of Oldspeed Manufacturing on this one. After years of being two of my favorite people on the internet to talk about footwear with, I was lucky enough to spend time with both of them last October at our Stitchdown’s Boot Camp expo—and I guess I needed more. Both Daves have in so…
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Send us a text 🧠 Mental health is rarely optional when you're living with a rare disease. Join Joanna, host of Rare Connection, for a powerful live conversation with Frank, a rare disease patient and mental health advocate who's working to make support more accessible for our community. 🌍 Living with sarcoidosis and other chronic conditions, Frank …
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Send us a text In this episode, I sit down with Brenda, a woman navigating the challenges of a painful, disabling, and unnamed orphan disease. Despite testing negative for VEXAS, relapsing polychondritis, and MAGIC syndrome, Brenda continues to suffer from spontaneous tendon tears and systemic inflammation. One key clue? She is HLA-B27 positive, a …
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Send us a text Hi, I'm Judd Fink From as early as the age of four, I’ve felt a profound connection to the universe, receiving intuitive messages from Source and those who have passed on. These insights have been my guiding light, shaping my life and empowering me to help others on their journeys. My purpose is to guide you toward this same clarity …
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Send us a text Hi, my name is Dan and I’m an alcoholic At 45 years of age my alcoholism and addictions came crashing down on me, I was facing 6-20 years in prison, I had given away a 17 year marriage and was on the verge of losing everything. Even with those consequences hovering, I was unable to stop consuming the very chemicals that put me in thi…
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About a half hour from Reno, there’s a place called Virginia City Nevada, where everything feels like it’s 1859 and the US’s largest silver deposit was just discovered. The bars say saloon and look the part. The cemetery is definitely haunted. And of course there’s a custom hatmaker—who shares a space in one of Virgnia City’s oldest surviving build…
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Send us a text In this episode of Rare Connection, host Joanna Ball speaks with [Guest Name], who shares their powerful journey with [Rare Disease]. Together, they discuss diagnosis challenges, treatment paths, daily life, and advocacy work. Whether you're a patient, caregiver, medical professional, or just curious—this conversation brings rare ins…
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Tokyo-based, half-American/half-Japanese Seiji McCarthy discusses his uniquely late path into shoemaking, the development of his vintage-Americana-inspired bespoke line, why he feels more American in Japan, and why it’s sometimes better if your bespoke shoemaker doesn't make your shoes entirely themselves. https://www.seijimccarthy.com/ Support the…
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Send us a text In this milestone 50th episode of Rare Connection, host Joanna sits down with Jenny, the powerful voice behind the blog Life’s A Polyp. Diagnosed with Familial Adenomatous Polyposis (FAP) as a child, Jenny underwent a total colectomy at age 9, followed by a series of life-threatening complications that led to multiple surgeries, an i…
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This week we've got a chat with Andrew Turriff, a Canadian shoemaker who studied at Cordwainer’s Footwear Design program in London, worked for some big sneaker brands, and did pattern work for fellow Canadians Viberg and time in the orthopedic world before deciding to make a zero-drop, anatomical, barefoot shoe with of top-end materials—and also ma…
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Send us a text Dr. Sharnael Wolverton Sehon is a captivating multidisciplinary expert who seamlessly blends naturopathic /energy medicine, spirituality, and quantum science to empower individuals on their journey to wholeness. As the founder of True TV and author of five groundbreaking books, including her international best seller "The Science of …
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Send us a text In this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his profession…
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Matt Priest, President and CEO of the Footwear Distributors and Retailers of America, came on the Shoecast the morning after 104% tariffs on Chinese goods into the US hit in a rapidly-moving-target trade war with the United States and just about every other country. What ARE tariffs? How might tariffs and general uncertainty impact massive shoe bra…
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Send us a text Melissa was 17 when she had her first child Evan. Evan was born with a cleft palate and developed 30 other conditions throughout his life. He wasn't expected to live and doctors told her to take him home and let him pass naturally. She was given what she calls a never list (He will never sit up, he will never talk, he will never stan…
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A great chat with the National Theatre's outgoing Managing Director - Digital, Emma Keith. We talked about how digital practice has developed at the NT and how that differs from other performing arts organisations. The history of the NT Live programme, and the importance of pilots and testing ideas. The hidden value of digital infrastructure, remot…
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Send us a text Guest: Khartik Uppalapati, Co-founder of RareGen Youth Network Episode Description: In this episode of Rare Connection, host Joanna welcomes Khartik Uppalapati, a remarkable young leader at the intersection of biomedical research and rare disease advocacy. Khartik shares his personal journey with rare conditions, which ignited his pa…
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Send us a text Guest(s): Allison & Elizabeth Episode Summary In this episode of Rare Connection, I’m joined by twin sisters Allison and Elizabeth, who both have familial Cerebral Cavernous Malformation (CCM)—a rare genetic condition that causes clusters of abnormal blood vessels in the brain and spinal cord. They share their personal diagnosis jour…
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Send us a text Rare disease patients often face long diagnostic delays, limited access to clinical trials, and challenges in finding treatments. Traditional medical records don’t always capture the full picture, making it harder to identify and support these patients. But what if advanced data and AI could change that? In this episode of Rare Conne…
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A chat with Beks Leary, Senior Social Media and Content Lead at the National Gallery in London. We talked about Beks's career, which has encompassed working at a diverse range of organisations including the Bush Theatre, BBC, and National Theatre before Beks's current role at the National Gallery. Beks explained the opportunities and challenges tha…
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Send us a text Join us on a heartfelt exploration with Noah from his roots in Green Bay, Wisconsin, where he was homeschooled in an evangelical Christian environment, Noah found solace and self-expression in the world of community theater. His journey into podcasting began with a show on Viking history, which surprisingly opened up opportunities fo…
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Send us a text In this episode of Rare Connection, Mimi shares her 20-year battle for a Sjögren’s syndrome diagnosis—a disease often misunderstood as just a "dry eye disorder" but one that led to respiratory failure and lung scarring in her case. She opens up about her journey with pulmonary fibrosis, nightly oxygen therapy, and the challenges of b…
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Send us a text Elise Morgan is a former personal trainer and IFBB Professional Fitness Athlete, turned dynamic life coach, author, speaker, podcast host, and healer with a bold and sassy yet compassionate approach to personal empowerment. With a master's degree from the school of hard knocks and certifications in life coaching, NLP, and sacred cere…
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Send us a text In this episode of Rare Connection, I sit down with Chris, aka Mr. Ohh, who shares his journey of living with AATD, undergoing weekly infusions, and facing the challenges of this condition—all while using humor as his greatest weapon. We dive into what it’s like to navigate daily life with AATD, the lung-liver connection, and how lau…
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Send us a text Heather Murphy is a certified somatics coach, trauma informed breathwork facilitator and current expressive arts therapist in training. She wants you to know that whatever is desired by you is destined by you. You have the power to create and manifest the life of your dreams. And through somatics, energetics and expressive arts she w…
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Send us a text Hereditary Hemochromatosis (HHC) is a genetic condition that causes the body to absorb too much iron, leading to serious health complications if left untreated. Many people go undiagnosed for years, mistaking symptoms for other conditions. In this episode of Rare Chef, I sit down with Michael J. Tallon, an author, traveler, and rare …
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Derek’s an OG forum junkie turned menswear writer for Put This On, mass publications like The New York Times, and his own always-excellent blog Die Workwear!. In the last few years, Derek has become, to many, Menswear Guy on Twitter, where his sharp cultural insights on style and complete lack of brevity break every rule of the platform in such a w…
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A conversation with Art Fund's Associate Director of Digital Experience, Mike Keating. Most of our chat focused on Mike's relatively recent work in developing Art Fund's first AI policy. The collaborative, open, and pragmatic approach that Mike and colleagues took to this work feels like a useful model that other cultural organisations could borrow…
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