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Patient Empowerment Program: A Rare Disease Podcast

n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)

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Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life. n-Lorem is a non-profit organization established to apply t ...
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In-depth conversations with top producers and directors in the Animation Industry. Join director / animator Scott Wiser on his journey toward directing his first animated feature film. See the originals at http://youtube.com/scottwiseranimation
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Interviews uncovering the edges incredible humans chase in human performance, perspective, and the art of living. Seeking the hacks, habits, and mindsets of high performers. Learn. Grow. Explore your potential. Live Harder. Chase Edges. | ChasingEdges.com | chasingedgespod@gmail.com
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The knowledge we are gaining at n-Lorem has even more value than benefiting nano-rare patients and their families. These insights will enable scientists to discover new therapeutic targets for both common and rare diseases, fundamentally changing the way we approach health and disease. Survey – Patient Empowerment Program PodcastRegister for the 20…
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Paul Compton and his wife Andrea chose to start a family through adoption. Unknown to anyone, one of their adopted boys, Taeson, was the inheritor of DRPLA, a progressive brain disorder caused by a mutation in the ATN1 gene. Determined to find a treatment and advocate for their son and others with the disease, the Comptons established CureDRPLA. In…
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Originally streamed on YouTube Live on Aug 2, 2024. Audio edited by Kiara Horowitz. Since Directing Animation Livecast Episode #2 starring Moonbot Co-founder Brandon Oldenburg, he has gone to develop Flight School Studio, The Immersive Department of Wonder, and now "InBetween" which got to show off development for it new feature film Bloom at Annec…
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Uploaded to YouTube July 24, 2024. Audio edited by Kiara Horowitz. Since interview Story artist, consultant, director Mike Morris, I've been amused by his contributions to "collaborative posts" on LinkedIn. Knowing these "articles" are used to train AI, he trolls them in the funniest way and ironically earned the "Top Animation Voice Badge" on his …
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Mutations affecting ion channels are the most common cause of 'applications for treatment' submitted to n-Lorem. These channels regulate the passage of essential electrically charged ions, like sodium, potassium, calcium, and chloride, into cells. Alas, ion channels pose a significant challenge in the ASO discovery process, as there is little room …
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The affected organs of our patients determine the route of administration for an ASO, as certain routes can better target specific organs and offer the best potency. The central nervous system (CNS) is the most common target we encounter, and for this, we dose intrathecally. Let’s dive into how this is done and the particulars of why this approach …
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Konstantina Skourti-Stathaki leads the n-Lorem research team behind the design and discovery of ASOs. Nadina, as we at n-Lorem call her, has a passion for helping patients and an excitement for science that is contagious. She joins the Patient Empowerment Program podcast to discuss her day-to-day activities as n-Lorem’s Director of ASO Design and D…
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Posted on YouTube June 14, 2024. Audio edited by Kiara Horowitz. Met Eli Harris at the Salt Lake Animation Expo and he is a professional in every sense of the word, nicknamed "The Image Maker" because of the inspiring passion that comes from his voice acting. His advice, tips, and experience were fun topics for discussion! From his LinkedIn bio:I a…
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Posted on YouTube May 31, 2024. Audio edited by Kiara Horowitz. At DrawingFORCE.com, Mike Mattesi, author of the FORCE drawing books and creator of the FORCE drawing theory teaches his drawing approach. Scott Wiser sat down with Mike at the Salt Lake Animation Expo for this challenging conversation about navigating the industry as an artist and abo…
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We’re recapping the 2023 Nano-rare Patient Colloquium in this special “Best of” episode. For the Colloquium, we gathered the nano-rare community under one single roof for a full day of presentations and panels with experts, partners, supporters, and patients. So, we are bringing some of the top moments directly to your speakers. Discover the origin…
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What's preventing insurers from covering the specialized care of patients with nano-rare mutations, thereby expanding access to available treatment options? Is it the population size, cost, or perceived risk? Given that the initial discovery of nano-rare mutations is relatively recent, paving the way for this population requires a nuanced approach …
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Stan Crooke speaks with Sonja Kampfer and Dr. Neil Shneider, associate professor of motor neuron disorders at Columbia Medical School, about Sonja’s daughter, Anna. Anna was diagnosed with an aggressive, fatal form of ALS at the age of 16. ALS is rare in teenagers, and this form of ALS is the worst of the worst. Sonja tells Anna’s story initial sym…
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Motherhood is a journey filled with challenges, but every step is worth it for the love and joy it brings. Zoe Hummel joins the show in this special Mother’s Day episode to discuss her son Mostyn’s emotional story to diagnosis, and the unique challenges and triumphs of being a nano-rare mom. Order your Mother's Day card by May 6, 2024! All proceed …
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Research physicians and their associated institutions are monumental to the mission of the n-Lorem Foundation and are truly transformational to the lives of the nano-rare patients they treat. Olivia Kim-McManus, M.D., was one of four physician panelists at our first Colloquium who participated in "A Physician's Perspective on n-Lorem and Nano-rare"…
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Genetics can be intricate, no doubt. With millions of mutations present in every human, one might wonder why not everyone is impacted by pathogenic diseases. The Patient Empowerment Program aims to assist you in grasping the fundamental concepts of various mutations and how they function, paving the way for you to enhance your understanding of gene…
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Each time one of the cells in your body divides to form a new cell, 3 BILLION genetic letters must be accurately duplicated. That’s a big number and mistakes DO happen in everyone. That’s right, if you’re reading this, you have a genetic mutation. On This Episode We Discuss: Your genetic alphabet – nucleotides How to think about DNA Replication Typ…
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What's one way to spread hope? By sharing your experiences and connecting with others who truly understand the everyday challenges nano-rare patients face. Shanna Tolbert was one of five nano-rare patient caregivers who participated in the panel, The Perilous Journey to Diagnosis and Treatment for Nano-rare Disease Patients. Listen to Shanna’s take…
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For n-Lorem’s Chief Operating Officer, Sarah Glass, the mission of n-Lorem is personal. Her son Ethan was diagnosed with a nano-rare mutation. A geneticist by training, she joined n-Lorem to oversee and direct the organization’s efforts to provide hope and potential help to those who need it most. It's more than just a job for her; she's powered by…
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Charissa Lipman joins n-Lorem founder and CEO, and host of the Patient Empowerment Program Podcast, Dr. Stan Crooke, in this question-and-answer episode to discuss additional questions asked during the 2023 Nano-rare Patient Colloquium. Charissa attended the inaugural Colloquium in October 2023 and brings the perspective of a patient family member,…
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We're diving into the archives to resurface this top downloaded episode from last year. Dan Doctoroff joined Patient Empowerment Program in February 2023 to talk about his mission to support a world where everyone with ALS lives. Dan is the former NYC deputy mayor for economics and former CEO of both Bloomberg L.P. and Sidewalk Labs. In this episod…
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Originally Streamed on YouTube Live Jan 19, 2024. Audio Edited by Kiara Horowitz. Andrew Chesworth is an Oscar-nominated filmmaker living in Burbank, CA. You can see his latest project, The Brave Locomotive at: • The Brave Locomotive ​He co-wrote and co-directed the short film One Small Step ​at Taiko Studios. He was an animator for Disney on Froze…
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For the return of the patient empowerment program podcast, we’re recapping the 2023 Nano-rare Patient Colloquium in this special “Best of” episode. For the Colloquium, we gathered the nano-rare community under one single roof for a full day of presentations and panels with experts, partners, supporters, and patients. So, we are bringing some of the…
  continue reading
 
Originally streamed on YouTube Live Dec 13, 2023. Audio edited by Kiara Horowitz. Josh Carroll and Ben Rische are such a powerful creative team that even though they've worked together for years and are currently on Steamroller Animation & Jalil Sadool's Spice Frontier, they're collaborating after hours on their own original Graphic Novel. Ben Risc…
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Originally streamed on YouTube Live Nov 3, 2023. Artificial Intelligence, more aptly named "machine learning" has been called both good and evil, so in this panel, we tried to have a balanced discussion with animation inustry experts to inspire animation students, business owners, studios, etc. Produced by Jordyn Curley and the Salt Lake Animation …
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Nano-rare diseases strip power from families and this often leads to hopelessness, anger, and dread. However, channeling these intense emotions to carefully navigate risk/benefit decisions is within one’s control. n-Lorem is different than standard drug development settings. Every risk/benefit decision that n-Lorem makes is in the context of the in…
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“How to Think About Risk” is arguably the most crucial topic ever discussed on the Patient Empowerment Program. Navigating decisions with substantial risk can be challenging, intricate, and even intimidating. The ability to detach from the intense emotions surrounding these choices is critical for making the best and most logical decisions. On This…
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Jeff Carroll, Ph.D., inherited a gene that will eventually lead to symptoms of Huntington’s Disease. Alongside researching this debilitating disease as an Associate Professor of Neurology at the University of Washington, he’s a Scientific Advisor for n-Lorem and member of the Access to Treatment Committee (ATTC) that helps screen and assess submitt…
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Chip Wilson, the creator of Lululemon and SOLVE FSHD, stands as a pioneer, business innovator, philanthropist, and a person affected by a rare disease. His passion for fitness led him to build a successful career in designing athletic wear, but a diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD), a degenerative muscle condition, altered hi…
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The Autonomic Nervous System automatically controls essential processes whether you’re awake or asleep. It’s the employee of the month. It gets the job done at any time of the day without you even having to ask it. It is our body’s autopilot system, controlling functions we often take for granted, like heart rate, digestion, pupil dilation, and eve…
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Originally streamed on YouTube Live Oct 6, 2023. Audio edited by Kiara Horowitz. Armand Serrano is a visual development artist, art director, and production designer for animated feature films and games specializing in environment design. He is currently working as a Production Designer for an unannounced biblical animated feature film slated for 2…
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Dr. Daniel Curran leads Takeda’s efforts to unlock innovation and deliver transformative medicines in a variety of rare-disease areas. Dan embraces learning from, collaborating with, and meeting members of the rare disease community in an effort to produce treatments that result in better health and a brighter future for rare. 2:02 How rare disease…
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As the first ever Nano-rare Patient Colloquium is just around the corner, we are flipping the script. Spectrum News’ Brady Huggett interviews n-Lorem founder and CEO, Dr. Stan Crooke, and picks his mind to understand the inspiration behind the creation and want for this first of its kind nano-rare community event. Along with some background informa…
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15 feature film pitches in 15 minutes: Enchanted, A Goofy Movie, Tarzan director Kevin Lima interviews Scott Wiser about his directing and development process. Original Episode: https://youtu.be/gzfeitSyfQc Extended: Pitches 1-10: • TEN PITCHES for Animated FEATURE FILM... Pitches 11-15: • Episode #50 EXTENDED - 5 New Film Pi... Scott Wiser is curr…
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Liver disease is a broad term encompassing a range of conditions that affect the liver's structure and function. The liver is extremely important as it wears many different hats when it comes to your body functioning properly like controlling metabolism, storing and breaking down nutrients for use, detoxification and more! No wonder there are many …
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Originally Streamed on YouTube Live Aug 18, 2023. Audio edited by Kiara Horowitz. Chris is a creator of family and faith-infused entertainment such as the Wingfeather Saga now streaming on Angel Studios' Platform. He spent over a decade producing 16 movies for the venerated VeggieTales franchise. That included the wildly successful "Wonderful Wizar…
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Lewis Caralla is in his 16th year in the Division 1 Football Strength & Conditioning industry, and the author of the newly released, Fire Lighters 365: Daily Motivational Messages for Coaches, Athletes, and Leaders. He is currently serving as the University of Charlotte 49ers Director of Strength and Conditioning. (2023) Caralla has served as the H…
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The liver is a master chemist that sends copious signals to help control our appetite and breaks down fats to be stored and used as energy and to combat starvation. Next time you’re hangry, think of your liver kicking into overdrive. On This Episode We Discuss: Producing countless small chemical metabolites Controlling iron homeostasis The liver an…
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Hannah Huesman is the Mental Performance Coordinator for the Texas Rangers Organization. She also travels for speaking engagements on how training your mental skills can help ANY performer. Hannah has worked with the FDNY, MLB, Business executives, actors, and athletes of all ages. She is also the host of #MentalSweatMonday on Instagram, Twitter, &…
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The liver has many important and magical metabolic functions. It converts the nutrients in our diets into substances that the body can use and filters toxic substances out from the body. You won't believe the sheer metabolic mayhem that happens behind the scenes!By n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)
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Darin Olien is co-host of the Emmy™ Award Winning, #1 Netflix docu-series, Down to Earth with Zac Efron. Spending nearly 20 years exploring the planet discovering new and underutilized exotic foods and medicinal plants as a Superfood hunter Darin developed, Shakeology – grossing over $4 Billion in sales since 2008 for Beachbody. He also created a p…
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Originally Streamed on YouTube Live July 21, 2023. Audio edited by Kiara Horowitz. He's not only directed the Simpsons and HouseBroken, but also animated on classics such as Cat's Don't Dance, Prince of Egypt, and The Tigger Movie. Join Eric Koenig and Scott Wiser as we discuss his long, successful career and his directing Philosophy!You can follow…
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Don Saladino has coached actors, athletes, & musicians for over 20 years. He opened his first NYC Gym, Drive 495, in 2005. After operating brick & mortar gyms for 15 years, Don expanded to a global online fitness business. He has developed a reputation for training some of the biggest names in Hollywood for the big screen. Ryan Reynolds, Blake Live…
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Argonaut Manufacturing Services Inc. CEO, Wayne Woodard, joins the Patient Empowerment Program to detail how Argonaut bottles vials of hope for n-Lorem patients. Argonaut is n-Lorem's provider of Sterile Fill-Finish for an optimal ASO. This means that the lyophilized ASO powder, which was manufactured with good manufacturing practices (GMP), gets f…
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Ryan is a 2 time Pro Bowl NFL Linebacker and 1st Round Draft Pick for the Pittsburgh Steelers. Known for his positivity and toughness, Ryan is now an author and keynote speaker where he speaks about life, leadership, and his journey after suffering a spinal cord injury versus the Bengals in 2017 and battling back to walk and train again. Ryan has c…
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Originally Streamed on YouTube Live June 30, 2023. Audio Edited by Kiara Horowitz. With this new Dreamworks film In theaters June 30, let's have a second conversation with Head of Story, Glenn Harmon, formerly the Head of Story at Skydance Animation, with storyboarding tips he picked up on projects as Boss Baby, All Hail King Julien, Hotel Transylv…
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Gay Grossman is the mother of an n-Lorem patient and co-founder of ADCY5.org. She has been active in the rare disease space for 25+ years and continues to fight and advocate for patients every single day by connecting ADCY5 families, speaking at events, and informing the entire rare community. On Wednesday, Gay joins the Patient Empowerment Program…
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Ali Gilbert is a men's health specialist and trainer. Founder of Metabolic Golf, The Silverback Summit, and a Golf Digest Top 50 Golf Fitness Professional. Ali has been committed to achieving excellence in the field of performance training for over a decade. She has become highly sought after for her unique approach to training that includes nutrit…
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Originally Streamed on YouTube Live June 16, 2023. Audio edited by Kiara Horowitz. Aaron Augenblick, in his own production company was worked on: City Island (PBS KIDS) Headspace (Netflix), Losers (Netflix), The Jellies (Adult Swim), Ugly Americans (Comedy Central), Superjail! (Adult Swim), and Wonder Showzen (MTV), etc. Augenblick Studios' indepen…
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Brace yourself for a deep dive into the various categories of lung disease. Obstructed airways and restricted blood flow pose significant risks to your body. So, learn preventive measures to safeguard your respiratory health. From pneumonia to the disruption of pulmonary blood flow, we'll explore the different culprits that block the flow of air an…
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Let's take a deep breath and fill our lungs with air. Ahh, doesn't that feel good? Our lungs are responsible for taking in oxygen from the air we breathe and distributing it to organs throughout our bodies and then ridding those organs of carbon dioxide. Get ready to dive into a fascinating episode on our lungs and how they protect us against parti…
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