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PODCAST

Patient Empowerment Program: A Rare Disease Podcast

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

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 the

science life sciences

All Episodes

43:08

Sharing Hope Through Storytelling & Connection with...

Patient Empowerment Program: A Rare Disease Podcast ·

2024/03/06

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 on the importance of dialogue and relive a few patient stories as told by the parents who participated in this panel.On this episode, we discuss:0:56 The

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40:54

Our Mission is Personal with Sarah Glass

Patient Empowerment Program: A Rare Disease Podcast ·

2024/02/21

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 her son and the entire nano-rare community. 1:20 Sarah’s background, early life, and scientific interests 7:20 Thinking about the patient experience

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45:45

Q&A #2 with Patient Families

Patient Empowerment Program: A Rare Disease Podcast ·

2024/02/07

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, discussing her experiences and takeaways from the meeting. She is the mother of Ryker, a nano-rare n-Lorem patient with a CACNA1A genetic mutation. Stan

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48:37

Everybody Lives with Dan Doctoroff

Patient Empowerment Program: A Rare Disease Podcast ·

2024/01/24

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 episode, Dan discusses his family’s battle with amyotrophic lateral sclerosis (ALS), his own inspiring story of how his diagnosis completely changed his outlook

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39:02

Best of the 2023 Nano-rare Patient Colloquium

Patient Empowerment Program: A Rare Disease Podcast ·

2024/01/10

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 top moments directly to your speakers. Discover the origins and aspirations of n-Lorem and Columbia University's Silence ALS initiative, visualizethe

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35:28

How to Think About "Risk" Part 2

Patient Empowerment Program: A Rare Disease Podcast ·

2023/12/13

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 individual patient’s symptoms, status, and needs. While we cannot promise benefit, we can promise that we will do our very best in the creation of an optimal

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42:35

How to Think About "Risk" Part 1

Patient Empowerment Program: A Rare Disease Podcast ·

2023/12/06

“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 Episode We Discuss:Why nano-rare patients and their families need to think effectively about riskRisk vignettes: infectious diseases, automobile and

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38:43

Inheriting Huntington's Disease and Aspiring to...

Patient Empowerment Program: A Rare Disease Podcast ·

2023/11/29

Jeff Carroll, Ph.D., inherited a gene thatwilleventually lead tosymptoms of Huntington’s Disease.Alongside researching this debilitating disease as anAssociateProfessor ofNeurology at the University of Washington,he’saScientificAdvisor for n-Lorem andmember of theAccess toTreatmentCommittee(ATTC)thathelpsscreenand assesssubmittedpatient applications.On This Episode We Discuss:2:45 Joining the Amy on a whim4:30 Serving in Kosovo and Germany6:00 Learning that his mother was diagnosed with Huntington’s

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01:00:16

Living a Longer, Healthier, and More Fun Life with...

Patient Empowerment Program: A Rare Disease Podcast ·

2023/11/08

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 his active lifestyle.On This Episode We Discuss:0:46 Working on the Alaska Oil Pipeline as a 17-year-old4:30 Saving money young and becoming an

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22:04

Autopilot: The Autonomic Nervous System

Patient Empowerment Program: A Rare Disease Podcast ·

2023/10/18

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 even breathing! Life would be pretty hard on manual.On This Episode We Discuss:“I Sing The Body Electric”Hemo and chemo-electric machinesThe nervous

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29:52

Better Health, Brighter Future for Rare with Dan Curran

Patient Empowerment Program: A Rare Disease Podcast ·

2023/10/04

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 is defined at Takeda4:10 Rare disease units at Takeda5:23 How Takeda economically justifies half of their pipeline being rare disease drugs9:06 The price

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36:04

Sneak Peek of the 2023 Nano-rare Patient Colloquium

Patient Empowerment Program: A Rare Disease Podcast ·

2023/09/20

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 information on the highly anticipated Colloquium, Stan candidly conveys n-Lorem's hurdles and joys in its first four years of service.

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14:40

Liver: Diseases

Patient Empowerment Program: A Rare Disease Podcast ·

2023/08/23

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 diseases associated with liver disfunction including various genetic ones. Get ready to explore... you guessed it, various diseases of the liver!On this

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20:23

Liver: The Master Chemist

Patient Empowerment Program: A Rare Disease Podcast ·

2023/08/09

The liver is a master chemistthatsendscopious signals tohelpcontrolour appetite and breaksdown fats to be stored and used as energy andto combat starvation.Next timeyou’rehangry, think of your liverkicking into overdrive.On This Episode We Discuss:Producing countless small chemical metabolitesControlling iron homeostasisThe liver and the gut microbiomeCombatting starvation and triggering appetiteManaging glucose levels

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30:00

Liver: Metabolic Magic

Patient Empowerment Program: A Rare Disease Podcast ·

2023/07/26

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!

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30:23

Bottling Hope

Patient Empowerment Program: A Rare Disease Podcast ·

2023/07/12

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 formulated and aliquoted into sterile vials. The final product is tested for various attributes to ensure maximal quality. Once assessed and approved, the

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42:26

Pursuing Diagnoses and Sequencing

Patient Empowerment Program: A Rare Disease Podcast ·

2023/06/28

Gay Grossman is themother of an n-Lorem patient and co-founder of ADCY5.org. She hasbeen active in the rare disease spacefor 25+ years and continues to fight and advocate for patients everysingledayby connecting ADCY5 families, speaking at events,and informing the entire rare community.On Wednesday, Gayjoins the Patient Empowerment Program podcast to discuss her daughter, Lilly,lessons that she has learned as a rare disease mom and advocate, the difficulty of gathering and sharing medical records

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16:02

Lungs: Heavy Breathing — Diseases and Obstructions

Patient Empowerment Program: A Rare Disease Podcast ·

2023/06/14

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 and blood!On this episode we discuss:Obstruction of the airways due to smoking, cancer, infectious diseases, etcObstruction of pulmonary blood

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26:55

Lungs: Defending Airways

Patient Empowerment Program: A Rare Disease Podcast ·

2023/05/31

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 particles, toxins, and infectious organisms in the air we breathe. The tinier the foreign particle, the more harmful they are! Let's explore the superhero-like

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45:43

One Year Anniversary: It Takes a Rare Community

Patient Empowerment Program: A Rare Disease Podcast ·

2023/05/17

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 purpose of building a nano-rare community and establishing a forum in which the voices of patients, advocates, and experts can come together focused on the

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