Patient Empowerment Program: A Rare Disease Podcast

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

N-Lorem Foundation

N-Lorem

Nano-Rare Diseases

Antisense Technology

Antisense Oligonucleotides

Rare Diseases

HNRNPH2

RNA World

Rare Genetic Diseases

Antisense Oligonucleotide (ASO) Technology

Clinical Trials

Caregiving

NANORARE Mutations

Health

TUBB4A

Patient Empowerment

Kif1a

Ion Channels

Patient Advocacy

Gene Therapy

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 na... more

51 ratings

Publishes	Twice monthly	Episodes	104	Founded	4 years ago
Number of Listeners		Categories	Life SciencesEducationScience

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Guests Host Reviews Charts Talking Points

Latest Episodes

Sneak Peek of the 2026 Nano-rare Patient Colloquium

A lot can happen in a year, and at n-Lorem, this past year has brought important milestones, new developments, and plenty to discuss at the upcoming 2026 Nano-rare Patient Colloquium.

In this special Colloquium preview episode, Brady Huggett, editor... more

10 Sep 2026 • 47 min

YouTube

Realities of the Nano-rare: Siblings, Unfairness and Hard Truths with Sally Jackson

Sally Jackson is a former actress, cookbook co-author, and mother of Susannah. In this Realities of the Nano-rare episode, Sally lets us into her family’s bubble, speaking candidly about the deeply complex and often terrifying realities of navigating... more

26 Aug 2026 • 1 hr 19 min • Most popular

YouTube

Silencing ALS with Neil Shneider

Silence ALS is an initiative that brings together Columbia University and n-Lorem to support the discovery, development, and treatment of individuals living with nano-rare genetic forms of amyotrophic lateral sclerosis (ALS) through personalized anti... more

5 Aug 2026 • 29 min

Miracles of Science: Antisense Technology

The final chapter of our Miracles of Science series has arrived! Today’s miracle is an important one: Antisense Technology, perhaps you've heard of it 😉

Every day, our patients benefit from what can only be described as miracles of science. Not the... more

15 Jul 2026 • 34 min

YouTube

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Recent Guests

Sally Jackson

Mother of Susannah and wife of Luke Rosen; special guest on the episode

Family of Susannah, advocate for nano-rare community

Episode: Realities of the Nano-rare: Siblings, Unfairness and Hard Truths with Sally Jackson

Neil Shneider

Claire Tao Associate Professor of Motor Neuron Disease and Director of the Eleanor and Lou Gehrig ALS Center at Columbia University

Columbia University

Episode: Silencing ALS with Neil Shneider

Becky Quick

Host of Squawk Box and leader of CNBC Cures at CNBC

CNBC

Episode: The Personal Rare Disease Journey Behind CNBC Cures with Becky Quick

Bill O'Sullivan

Patient with CHCHD10-related ALS

Bauer family, CHCHD10-ALS case

Episode: Patient Story: Understanding ALS with Bill O'Sullivan and Neil Shneider, M.D., Ph.D.

Callan Pleasant

Parent of Layken; advocate and storyteller

Pleasant family; Nano-rare patient advocate

Episode: Realizing Hope for Layken

Oliver Glass

Parent of a nano-rare patient, clinician by training? (as introduced in dialogue)

Household member of Ethan; Chief Scientific Officer of the Dirk 1A Foundation

Episode: Realities of the Nano-rare: Episode 2 Oliver Glass

Sarah Glass

COO of n-Lorem; wife and mother of a nano-rare patient

n-Lorem Foundation

Episode: Realities of the Nano-rare: Episode 1 with Sarah Glass

Andrew Lo

Professor of Finance, MIT Sloan School of Management; Director, MIT Laboratory for Financial Engineering; PI, CSAIL

Massachusetts Institute of Technology

Episode: Where Emerging FDA Draft Guidance may Lead for Nano-rare Patients

Natacha Gassenbach

Senior Vice President of Corporate Affairs and Chief Communication Officer at Biogen

Biogen

Episode: Natacha Gassenbach of Biogen: 2025 Hero of n-Lorem

Host

Stan Crooke

Host of the podcast series

Reviews

5.0 out of 5 stars from 51 ratings

So informative and important!
What the n-Lorem foundation is doing for rare disease is a game changer. Hearing from Stan Crooke and the experts and families he interviews is so informative.
Apple Podcasts
5
Flygirl3663
United States4 years ago
Nano what?
Prior to n-Lorem, patients who didn’t fit into the current healthcare model, were isolated and alone. With this podcast, these patient are front and center. A podcast for and about them! And a master class in basic drug chemistry that anyone would benefit from.
Apple Podcasts
5
Friendly?
United States4 years ago
Excellent resource for patients. Very clear!
Thanks to Dr. Stanley Crooke and nLorem Foundation for an excellence resource for people living with diseases, their families and for all who want to learn more about BioPharma.
Best wishes!
Apple Podcasts
5
lalitafer
United States4 years ago
Fantastic
Very exciting news
Apple Podcasts
5
papanormie
United States4 years ago
Outstanding
Liked learning more about the rare diseases.
Apple Podcasts
5
ealinek
United States4 years ago

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Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

Guests are seen as credible voices that connect research, care delivery, and patient impact.

Listeners value the blend of scientific depth with mission-driven advocacy and philanthropy.

Audience consistently notes accessibility of complex science and personal stories that drive empathy for nano-rare patients.

Chart Rankings

How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.

Apple Podcasts	#37	Ireland/Science/Life Sciences
Apple Podcasts	#59	Hong Kong/Science/Life Sciences
Apple Podcasts	#105	Brazil/Science/Life Sciences
Apple Podcasts	#117	Japan/Science/Life Sciences

Talking Points

Recent interactions between the hosts and their guests.

Silencing ALS with Neil Shneider

Q: What is it like to offer hope instead of a grim prognosis when talking to ALS patients and families?

Neil explains that ALS remains deadly for most patients, but advances in antisense technology and collaborative programs like Silence ALS provide a framework to offer tangible hope through individualized research and potential therapies, changing how clinicians communicate with patients.

Realities of the Nano-rare: Episode 1 with Sarah Glass

Q: As you look forward to a long life for Ethan, how are you thinking about that? How are you planning it? What terrifies you?

The biggest fear is something happening to Stan or me before we have plans in place to protect Anela and Ethan. So we're focusing on estate planning, special needs planning, life insurance, and creating a future where Ethan can be as independent as possible, potentially involving care arrangements that balance safety with autonomy.

Realities of the Nano-rare: Episode 1 with Sarah Glass

Q: So, maybe as a first step, why don't you just tell us a little bit about yourself and your family, so that we can begin to put some context.

I'm a geneticist by training with two decades in rare disease work, married with two kids, and we live in Durham, North Carolina. Our son Ethan has a nano-rare condition, which shaped our family's daily life, the care we seek, and the way we think about the future. This background helps us understand how families navigate uncertainty, diagnoses, and ongoing care.

Realities of the Nano-rare: Episode 2 Oliver Glass

Q: So Oliver, just to get underway.

Oliver describes his background, the early signs that led to suspicion something was wrong with Ethan, and how his scientific training intersected with the family's search for answers, including how the Dirk 1A mutation influenced their path.

Connor Gooley's Story: A First for TUBB4A Treatment

Q: What kind of progress have you seen since starting treatment?

After four doses, they are noticing improvements in Connor's movements, like stability in his head and some increase in control, making them cautiously optimistic.

Audience Metrics

Listeners, social reach, demographics and more for this podcast.

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Frequently Asked Questions About This Podcast

What is This Podcast about and what kind of topics does it cover?

This show centers on nano-rare diseases and antisense technology, featuring leaders in biotech, medicine, and patient advocacy. Episodes dissect cutting-edge therapies, especially personalized antisense medicines, and explore the ecosystems that enable access for ultra-rare patients, including funding, policy, and media partnerships. Noteworthy is the consistent emphasis on patient-centered narratives, rapid translational science, and a philanthropic model that delivers free, life-long ASO treatments. Listeners can expect deep dives into biology made accessible, plus real-world stories from families and researchers driving rare-disease innovation.

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2. This American Life
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How many episodes of this podcast are there?

this podcast launched 4 years ago and published 104 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on this podcast?

Recent guests on this podcast include:

1. Sally Jackson
2. Neil Shneider
3. Becky Quick
4. Bill O'Sullivan
5. Callan Pleasant
6. Oliver Glass
7. Sarah Glass
8. Andrew Lo

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