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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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Looking for purpose-driven career or business advice? Want to match your personal brand with a values-aligned organization? The Caring Economy is your destination. Join us weekly for insightful discussions with influential leaders sharing how they balance purpose, profit, and legacy in today's challenging business landscape. Topics range from corporate social responsibility to brand stewardship and beyond. Discover how to transform your career or business through caring principles. Engage wi ...
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In this thought-provoking episode of The Caring Economy, host Toby Usnik is joined by Adam Weinberg, President of Denison University. Adam is a trailblazer in higher education, pushing the boundaries of what a liberal arts college can achieve in the 21st century. Under his leadership, Denison has not only weathered challenges like the COVID-19 pand…
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Two years of treatment—two years of strength, courage, and blazing a trail for other nano-rare patients! 🎉 Susannah's story was the first shared on the Patient Empowerment Program podcast. Now, two years later, her father, Luke Rosen, and her physician, Dr. Jennifer Bain, detail Susannah’s remarkable progress since beginning regular treatments—high…
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In this powerful episode of The Caring Economy podcast, host Toby Usnik welcomes Dave Woodruff, co-founder and Chief Revenue Officer of the Bob Woodruff Foundation. Join us as we explore Dave’s incredible journey from supporting his brother, Bob Woodruff, through a life-altering injury to building one of the leading grant-making organizations in th…
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In this powerful episode of The Caring Economy, host Toby Usnik sits down with Baron Raj Loomba, a visionary philanthropist, entrepreneur, and member of the UK's House of Lords. Baron Loomba shares his deeply personal story of growing up in India, losing his father at a young age, and witnessing the harsh treatment of his widowed mother. These expe…
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Take a glimpse behind the curtain as we offer you a sneak peek of the 2024 Nano-rare Patient Colloquium. We’re thrilled to welcome back longtime biotech journalist and current Features Editor of The Transmitter, Brady Huggett, to the podcast. In an interview with n-Lorem founder and CEO Stan Crooke, they preview the upcoming Colloquium, diving into…
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In this inspiring episode of The Caring Economy, we sit down with Caitlin Dodge, a creative leader passionate about turning bold ideas into impactful, purpose-driven marketing. With a career dedicated to blending innovation with social good, Caitlin shares her insights on the future of marketing, the importance of aligning business with purpose, an…
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Hongene Biotech is a producer of RNA building blocks – the first step for what’s possible in RNA drug-discovery and development. David Butler, Ph.D., Chief Technology Officer of Hongene, joins the Patient Empowerment Program to discuss why Hongene aims to help make RNA medicines accessible and affordable for patients everywhere, regardless of preva…
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In this heartfelt episode of The Caring Economy, we sit down with Lynne Hughes, the inspiring founder and CEO of Comfort Zone Camp (CZC). By the age of 12, Lynne had tragically lost both of her parents, leaving her to navigate the complex world of grief as a child. But out of her personal loss came a powerful mission: to help grieving children find…
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In this thought-provoking episode of The Caring Economy, host Toby Usnik sits down with the legendary Esther Dyson—journalist, investor, and visionary. Esther's career spans decades of innovation, from shaping the early tech world to her current passion for preventive healthcare. Join us as we dive deep into Esther's incredible journey, exploring h…
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The concluding episode of the Knowledge is Power series. 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…
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Join us in this inspiring episode of The Caring Economy as we sit down with Amy Freitag, a dynamic leader at the helm of the New York Community Trust. Amy shares her fascinating journey from her roots in Akron, Ohio, to becoming a key figure in New York's philanthropic landscape. With over 100 years of legacy behind the Trust, Amy offers insights i…
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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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Join us for an inspiring episode of The Caring Economy as host Toby Usnik interviews Lynette Bell, President of the Truist Foundation. With a focus on strategic philanthropy, economic mobility, and community development, Lynette shares her journey from a banking career to leading initiatives that uplift underserved communities. Learn how Lynette is…
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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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Welcome to The Caring Economy with your host Toby Usnik. In our latest episode, we're honored to feature Rebecca Williford, the President and CEO of Disability Rights Advocates (DRA), the nation's leading nonprofit legal center focused on disability rights impact litigation. Rebecca shares her incredible journey from a legal fellow to CEO, detailin…
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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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Father Edwin Leahy’s journey is a testament to commitment, resilience, and transformative leadership. He became the 23rd Headmaster of St. Benedict’s Prep in 1972, a role he assumed at the age of 26. Under his guidance, the school reopened its doors after a brief closure, starting with just 89 students and 14 faculty members, including thirteen mon…
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Joan Steinberg’s journey is one of passion and purpose. Starting her career in public relations and the nonprofit sector, Joan found her true calling at Morgan Stanley, where she has been making a significant impact for over two decades. With a focus on strategic philanthropic efforts, Joan has spearheaded initiatives that have benefited over 37 mi…
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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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Hey there, friends! I’m Toby Usnik, and I'm thrilled to share the latest episode of The Caring Economy with you. Today, we have the privilege of chatting with Traci Sanders, the incredible VP-Global Head of Diversity, Equity, and Inclusion at Verizon. Traci is a true pioneer in fostering an inclusive workplace, and her journey is nothing short of i…
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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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Join host Toby Usnik on The Caring Economy as he sits down with Vladimir Botsvadze, a luminary in digital transformation and marketing. In this episode, Vladimir shares his extraordinary journey from growing up in Georgia to becoming a globally recognized thought leader and influencer. Vladimir, named the #1 Global Marketing Thought Leader by Think…
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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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Join us on this enlightening episode of "The Caring Economy," where we dive into the remarkable journey of Lindsey Savage, a senior vice president at Blackstone and a staunch advocate for military spouses in the legal profession. Discover how Lindsay is transforming the landscape for military spouse attorneys through her pioneering efforts with the…
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In this enlightening episode of The Caring Economy, join us as we delve into the remarkable journey of Dr. Dev Pragad, CEO of Newsweek. Discover how a background in technology and academia fueled his innovative approach to revitalizing one of the world's most storied media brands. Dr. Pragad shares candid insights into the strategic decisions that …
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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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Gain valuable advice from Fabio on building a successful career in media law, emphasizing the importance of resilience, adaptability, and ethical decision-making. Join us on Spotify for a riveting conversation with Fabio Bertoni, where you’ll gain a deeper understanding of the crucial role legal minds play in the world of media and journalism. Whet…
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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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Welcome to this inspiring episode of The Caring Economy, hosted by Toby Usnik. Today, we're venturing into the extraordinary lives of Andi and Randy Almond, a remarkable couple who, alongside their children Finn and Aria, took the bold step of turning the world into their classroom for an entire year. Andi Almond, a seasoned leader in strategic com…
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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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Dive deep into the heart of corporate social responsibility with Sona Khosla, Chief Impact Officer at Benevity, in an inspiring episode that explores the nexus of business and social good. Sona, with over 15 years of dedication to mission-driven organizations, unveils her journey of shaping Benevity's role in the CSR space, fostering environments w…
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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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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
 
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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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