Podcast terbaik Patient Empowerment (2025)

1
Connor Gooley's Story: A First for TUBB4A Treatment 46:49

13d ago46:49

46:49

Connor Gooley is the first patient ever treated with an ASO for TUBB4A-Related Leukodystrophy, a condition that severely disrupts his nervous system, slows nerve impulses, and impairs his fine motor skills. As a result, Connor cannot speak, walk, sit up on his own, or chew well. Still, he manages to army crawl, propel himself in his wheelchair, and…

1
What Are iPSCs—and Why Do They Matter? 20:08

27d ago20:08

20:08

Induced pluripotent stem cells (iPSCs) are a groundbreaking, and mind-blowing, scientific advancement—one of many that help make it possible for n-Lorem to do what we do. In short, typical skin cells (such as fibroblasts) are taken from an individual and reprogrammed using specific factors to become iPSCs. These iPSCs are then redifferentiated into…

1
“Out, Proud, and Healing: A Gay Man’s Empowered Response to Prostate Cancer” - PC-PEP Podcast Ep. 9 52:19

1M ago52:19

52:19

In this powerful episode of the PC-PEP Podcast, we hear from Uli, a German-born man living in Canada, who bravely recounts his journey through prostate cancer as a gay man. From the shock of diagnosis to undergoing brachytherapy, hormone therapy, and external beam radiation, Uli candidly reflects on the emotional and physical toll—and the layers of…

1
“What Do You Do When the Ground Shifts Beneath You?” A Young Man’s Prostate Cancer Journey - PC-PEP Podcast Episode 8 54:50

1M ago54:50

54:50

In this powerful and uplifting episode of the (Prostate Cancer - Patient Empowerment Program) PC-PEP Podcast, we sit down with Nick Aiken, a board member of the Prostate Cancer Foundation of New Zealand (PCFNZ) and a passionate advocate for men’s health from Napier, Aotearoa New Zealand. Nick shares his journey through a prostate cancer diagnosis i…

1
“Becoming More”: A Problem-Solver’s Journey from Prostate Cancer to Connection — PC-PEP Podcast Episode 7 59:54

1M ago59:54

59:54

Welcome to the Prostate Cancer - Patient Empowerment Program (PC-PEP) Podcast! 🎙️ Episode 7. I’m so glad you’ve joined us for this powerful episode on healing, connection, and what it means to truly evolve through a cancer journey. I’m your host, Dr. Gabriela Ilie, a scientist devoted to developing evidence-based, whole-person care programs for can…

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"No One Should Go Through This Alone": A Gay Man’s Journey from Silence to Empowerment — PC-PEP Podcast Episode 6 26:55

1M ago26:55

26:55

Welcome to Episode 6 of the Prostate Cancer Patient Empowerment Program (PC-PEP) Podcast. In this powerful episode, I speak with David Ashcroft, a gay man living on an island near Chester, Nova Scotia, who shares his deeply personal journey through prostate cancer — from shock and isolation to connection, knowledge, and empowerment. When David was …

1
Biological Systems & Chemical Networks 25:23

1M ago25:23

25:23

What Are Chemicals? | How Drugs Work in the Body | Understanding Homeostasis We’re all made of chemicals—but what exactly is a chemical? In this video, we break down the basics: chemicals are forms of matter that exist as solids, liquids, or gases. Inside living organisms, these chemicals create complex networks that keep us alive and balanced—a pr…

1
Why ASO Technology? 29:22

2M ago29:22

29:22

What makes antisense oligonucleotides (ASOs) so special? Let’s first understand what an oligonucleotide is. An oligonucleotide is a short strand of synthetic DNA or RNA (a nucleic-acid chain), usually consisting of up to approximately 20 nucleotides long—designed to bind with specific sequences in the body. At n-Lorem, our ASO technology is built o…

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"Finding My Voice: A Young Gay Man’s Unexpected Path to Prostate Cancer" — PC-PEP Podcast Episode 5 1:18:32

2M ago1:18:32

1:18:32

Welcome to the Prostate Cancer Patient Empowerment Program (PC-PEP) Podcast! 🎙️ Episode 5. In this episode, we hear from Matthew, a PC-PEP participant whose story reminds us that life can shift in an instant. Matthew describes himself as “just bumbling along” — living a quiet life, trying to stay healthy in his 50s — when a routine check-up led to …

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“Early Detection Saves Lives” — PC-PEP Podcast Episode 4 58:31

2M ago58:31

58:31

Welcome to the Prostate Cancer Patient Empowerment Program (PC-PEP) Podcast! 🎙️ Episode 4. I’m so glad you’ve joined us for this important conversation about early detection, resilience, and reclaiming life after a prostate cancer diagnosis. I’m your host, Dr. Gabriela Ilie, a Scientist committed to developing evidence-based programs that empower c…

1
Connor Dalby's Story: n-Lorem Patient #001 with Kelley Dalby and Dr. Olivia Kim-McManus 38:55

2M ago38:55

38:55

Connor Dalby was born with an SCN2A ion channel mutation causing severe epilepsy and eventually leading to hospice care at an early age. It was a chance hallway conversation between Connor’s mom and Dr. Stan Crooke at a conference that sparked the idea for what would become n-Lorem. In a full-circle moment, Connor went on to become the very first p…

1
Our Mission is Personal with Sarah Glass 41:36

3M ago41:36

41:36

For n-Lorem's Chief Operating Officer, Sarah Glass, the mission of n-Lorem is deeply personal. Her son Ethan was diagnosed with a nano-rare mutation, a journey that has shaped her commitment to the cause. A geneticist by training, Sarah joined n-Lorem to help lead and guide the organization in its efforts to offer hope and potential help through tr…

1
How Cells Phone a Friend: Local Communication 21:11

3M ago21:11

21:11

Our bodies are like bustling cities of cells, always chatting and working together. They don’t just send long-distance messages to organs—they also gossip locally, getting nearby cells to spring into action. Juxtacrine communication is like a handshake between cells—they have to be up close and personal to pass the message along! Unlike long-distan…

1
How Cells Phone a Friend: Long Distance Communication 36:12

4M ago36:12

36:12

How do cells communicate with each other? With trillions of cells in the human body, seamless collaboration is essential within this intricate cellular society. Cells work together to form organs, and when one organ needs another to perform a task, they send signals across distances—much like picking up the phone and calling someone. Organ Hotline …

1
Rosie’s Story: A Nano-rare Treatment Pioneer 49:30

4M ago49:30

49:30

Rosie was the first of three HNRNPH2 patients to receive treatment with an n-Lorem ASO, helping to pave the way for others. Her parents, Nicole and Bobby, share their daughter's journey and how they have adapted as a family to meet her unique needs. As a pediatrician, Nicole understands the complexities of medical care, yet she acknowledges that ev…

1
Sloane's Story: A Shared Medicine 53:31

5M ago53:31

53:31

Sloane was born with a KIF1A mutation and is a special case at n-Lorem—she was the first patient to receive a medicine originally designed for someone else. Her mother, Megan, and grandfather, Tom, join the Patient Empowerment Program to share her journey and provide an update on how she’s doing six months after treatment. On This Episode We Discus…

1
5-years of n-Lorem: What Have We Learned? 45:30

5M ago45:30

45:30

Five years of creating medicines, instilling hope, and overcoming steep challenges—all with the singular goal of improving the lives of nano-rare disease patients. Along the way, we’ve proven that WE CAN treat these patients safely and effectively, delivering significant benefit. But what else have we discovered throughout this journey? Thank you t…

1
I Sing the Body Electric 33:27

6M ago33:27

33:27

Walt Whitman’s 1855 poem, I Sing the Body Electric, is a celebration of the human body and its intrinsic connection to the universe. During that era, scientists were just beginning to understand that humans are, indeed, electrical beings. Whitman’s deliberate use of the word "electric" in his tribute to the human body was quite remarkable, as the t…

1
Q&A - 2024 Nano-rare Patient Colloquium Recap 24:22

6M ago24:22

24:22

Join Stan Crooke, n-Lorem founder, CEO, and host of the Patient Empowerment Program Podcast, alongside Amy Williford, Sr. Director of Communications and Donor Relations, for a special episode. In this post-colloquium Q&A, Stan recaps the 2024 Nano-rare Patient Colloquium and the progress n-Lorem has made as the organization nears its 5-year anniver…

1
Best of the 2024 Nano-rare Patient Colloquium 58:13

7M ago58:13

58:13

This year’s Colloquium spanned two perfect autumn days in beautiful Cambridge, Massachusetts where hundreds of nano-rare community members from around the world gathered under a single roof to learn, connect, and support one another. We’re pleased to announce that the event welcomed over 750 attendees, both in-person and virtually. It’s each and ev…

1
"Live forward!”- The Prostate Cancer-Patient Empowerment Program-PC-PEP Podcast 3 1:11:07

7M ago1:11:07

1:11:07

Welcome to the Prostate Cancer Patient Empowerment Program (PC-PEP) Podcast! 🎙️ Episode number 3. I’m so glad you’ve joined us for this episode, where we dive into the deeply personal and inspiring journeys of individuals navigating life after a prostate cancer diagnosis. I’m your host, Gabriela Ilie, a Scientist committed to developing evidence-ba…

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“Up the Ladder – Finding Joy in Everyday” - The Prostate Cancer Patient Empowerment Program - PCPEP Podcast 2 42:42

7M ago42:42

42:42

Welcome to the Prostate Cancer Patient Empowerment Program (PC-PEP) Podcast! 🎙️ I’m thrilled to welcome you to this episode, where we explore the inspiring journeys of individuals navigating life after a prostate cancer diagnosis. I’m your host, a Scientist dedicated to creating evidence-based programs that empower cancer patients to take control o…

1
"Don't let it spoil your day!" - The Prostate Cancer Patient Empowerment Program - PCPEP Podcast 1 51:13

8M ago51:13

51:13

Welcome to the "Prostate Cancer - Patient Empowerment Program (PC-PEP) Podcast," Episode Number 1. We're excited to launch our very first episode. Whether you've been diagnosed with prostate cancer, are currently undergoing treatment, or are navigating life post-diagnosis, this podcast is for you. I’m one of your hosts, a Scientist whose work is ab…

1
Susannah's Progress: Two Years of ASO Treatment with Dr. Jennifer Bain and Luke Rosen 40:38

8M ago40:38

40:38

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…

1
Sneak Peek of the 2024 Nano-rare Patient Colloquium 41:44

9M ago41:44

41:44

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…

1
The Building Blocks of What's Possible with David Butler, Ph.D. 29:50

9M ago29:50

29:50

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…

1
Knowledge is Power: Part 2 29:34

10M ago29:34

29:34

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…

1
Knowledge is Power: Part 1 35:19

10M ago35:19

35:19

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…

1
Adopting a Rare Son with Paul Compton 33:39

11M ago33:39

33:39

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…

1
Ion Channel Mutations: The Complexities of Treatment 30:16

11M ago30:16

30:16

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 …

1
Why We Dose Intrathecally 29:18

12M ago29:18

29:18

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 …

1
Behind the ASO Design and Discovery with Konstantina Skourti-Stathaki, Ph.D. 27:33

12M ago27:33

27:33

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…

1
Best of the 2023 Nano-rare Patient Colloquium 36:51

1y ago36:51

36:51

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…

1
The Hurdles of Insuring Patients with Nano-rare Mutations with Alan Lotvin, M.D. 50:51

1y ago50:51

50:51

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 …

1
Anna’s Story of Hope and Help: FUS-ALS with Sonja Kämpfer and Dr. Neil Shneider 43:06

1y ago43:06

43:06

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…

1
Mostyn’s Story: Mother’s Day Special with Zoe Hummel 50:06

1y ago50:06

50:06

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 …

1
Physicians and Institutions Transform the Lives of Nano-rare Patients with Olivia Kim-McManus, M.D. 48:53

1y ago48:53

48:53

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"…

1
Advanced Genetics Part 2 25:52

1y ago25:52

25:52

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…

1
Advanced Genetics Part 1 30:13

1+ y ago30:13

30:13

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…

1
Sharing Hope Through Storytelling & Connection with Shanna Tolbert 43:08

1+ y ago43:08

43:08

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…

1
Our Mission is Personal with Sarah Glass 40:54

1+ y ago40:54

40:54

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…

1
Q&A #2 with Patient Families 45:45

1+ y ago45:45

45:45

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,…

1
Everybody Lives with Dan Doctoroff 48:37

1+ y ago48:37

48:37

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…

1
Best of the 2023 Nano-rare Patient Colloquium 39:02

1+ y ago39:02

39:02

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…

1
How to Think About ”Risk” Part 2 35:28

1+ y ago35:28

35:28

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…

1
How to Think About ”Risk” Part 1 42:35

1+ y ago42:35

42:35

“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…

1
Inheriting Huntington’s Disease and Aspiring to Prolong Lives with Jeff Carroll 38:43

1+ y ago38:43

38:43

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…

1
Living a Longer, Healthier, and More Fun Life with Chip Wilson 1:00:16

1+ y ago1:00:16

1:00:16

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…

1
Autopilot: The Autonomic Nervous System 22:04

1+ y ago22:04

22:04

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…

1
Better Health, Brighter Future for Rare with Dan Curran 29:52

1+ y ago29:52

29:52

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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