Τα καλύτερα Patient Empowerment podcast (2024)

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

5d 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
"Live forward!”- The Prostate Cancer-Patient Empowerment Program-PCPEP Podcast 3 1:11:07

23d 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…

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

23d 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
“Up the Ladder – Finding Joy in Everyday” - The Prostate Cancer Patient Empowerment Program - PCPEP Podcast 2 42:42

27d 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

2M 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

2M 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

3M 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

3M 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

4M 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

4M 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

5M 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

5M 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

6M 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

6M 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

7M 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

7M 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

8M 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

8M 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 …

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

8M 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

9M 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

9M 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

10M 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

10M 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

11M 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

11M 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

12M 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

1y 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

1y 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…

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

1y 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

1y 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

1y 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

1y 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…

1
Sneak Peek of the 2023 Nano-rare Patient Colloquium 36:04

1+ y ago36:04

36:04

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…

1
Liver: Diseases 14:40

1+ y ago14:40

14:40

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 …

1
Liver: The Master Chemist 20:23

1+ y ago20:23

20:23

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…

1
Liver: Metabolic Magic 30:00

1+ y ago30:00

30:00

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

1
Bottling Hope 30:23

1+ y ago30:23

30:23

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…

1
Pursuing Diagnoses and Sequencing 42:26

1+ y ago42:26

42:26

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…

1
Lungs: Heavy Breathing — Diseases and Obstructions 16:02

1+ y ago16:02

16:02

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…

1
Lungs: Defending Airways 26:55

1+ y ago26:55

26:55

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…

1
One Year Anniversary: It Takes a Rare Community 45:43

1+ y ago45:43

45:43

May marks a year of podcasting for us, and we’re thankful for all those who have participated and the growing number of people who have listened to the podcasts. We are pleased with the overwhelming support for the podcast and the willingness of our partners and patients to share their stories. We launched our Patient Empowerment Program with the p…

1
Coming Together for the Nano-rare Patient 31:53

1+ y ago31:53

31:53

This episode is proudly sponsored by our partner, Alnylam Pharmaceuticals, the leading RNAi therapeutics company. When Stan Crooke ran Ionis and John Maraganore ran Alnylam, they were partners that turned into rivals — and not always friendly ones — as they persevered to pursue an entirely new therapeutic space; RNA-targeted drug discovery and deve…

1
Q&A #1 with Patient Families 51:24

1+ y ago51:24

51:24

Amber Freed and Shanna Tolbert join n-Lorem founder and CEO, Stan Crooke, for the first ever Patient Empowerment Program Q&A episode. Amber and Shanna are two nano-rare patient mothers and rare disease advocates who have experience with the n-Lorem pathway to treatment as caregivers. Through their experiences, and by canvasing others in the nano-ra…

1
Bits and Bytes Help Streamline Bench to Bedside 21:41

1+ y ago21:41

21:41

The creation of a drug consists of a copious and complicated series of projects that are all intertwined. Andy Mehrotra, CEO of Unipr, joins the Patient Empowerment Program to discuss how Unipr’s AI based cloud program, project, and portfolio management platforms allow organizations like n-Lorem to quickly analyze data to inform program management.…

1
Fostering Collaboration to Fight ALS 31:53

2y ago31:53

31:53

Manish Raisinghani joins the Patient Empowerment Program to discuss how Target ALS fosters collaboration between academia and industry to research and accelerate the fight against ALS. Target ALS has funded over 50 collaborative projects. Greater than 50% of which have had an industry partner and over 60% have resulted in an ongoing drug discovery …

1
The Energy of Life 25:02

2y ago25:02

25:02

Regardless of the circumstances, life finds a way! Jurassic Park got that one right. Cells need to live and depending on the conditions they will use one of two systems that take nutrients, break them down and use that process to generate energy. That energy is needed to sustain life – hence why it is called The Energy of Life. All the order that y…

1
Everybody Lives 47:08

2y ago47:08

47:08

Dan Doctoroff joins the Patient Empowerment Program 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 episode, Dan discusses his family’s battle with amyotrophic lateral sclerosis (ALS), his own inspiring story…

1
Cardiovascular System Part 4B: (The Spigot) Kidney Diseases 22:23

2y ago22:23

22:23

If your car’s oil filter is clogged, it’ll lead to severe issues within your engine. The same goes for the blood filters of your body... but worse. The kidneys filter water-salable waste from the blood. As kidneys fail, waste builds up. A blockage in your kidneys may cause a heart attack, stroke, or kidney failure. Detecting kidney disease early on…

1
Cardiovascular System Part 4A: (The Spigot) Kidney Functions 20:23

2y ago20:23

20:23

There is so much filtration around you, you may not even notice. Your water, coffee, air, gasoline, and social media feeds... all filtered. So is your blood! It's just a part of everyday life at this point. This episode of the Patient Empowerment Program focuses on the functions of the spigot of the cardiovascular system – the Kidneys. Their main j…

1
Cardiovascular System Part 3: (The Pipes) Arteries and Veins 24:00

2y ago24:00

24:00

Drip... Drip. When your pipes are leaking, it's never a good thing. Who you gon’ call, YOUR DOCTOR! The next lesson in our ‘pipe’-line focuses on the pipes of the cardiovascular system - the Arteries and Veins. Learn about the arterial and venous systems that manage blood flows with differing pressures, high and low. However, both systems have mech…

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