Patient Empowerment Program: A Rare Disease Podcast

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

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Description

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 efficiency, versatility and specificity of antisense technology to charitably provide experimental antisense oligonucleotide (ASO) medicines to treat patients (less than 30 patients) that are the result of a single genetic defect unique to only one or very few individuals. The advantage of experimental ASO medicines is that they can be developed rapidly, inexpensively and are highly specific. n-Lorem was founded by Dr. Stan Crooke, who founded IONIS Pharmaceuticals in 1989 and, through his vision and leadership, established the company as the leader in RNA-targeted therapeutics. The podcast is produced by n-Lorem Foundation and hosted by Dr. Stanley T. Crroke, who is the Founder, CEO and Chairman. Our videographer is Jon Magnuson. Our producers are Kira Dineen, Jon Magnuson, Kim Butler, and Amy Williford. To learn more about n-Lorem, visit nlorem.org. Contact us at podcast@nlorem.org.

Episode Date
Biological Systems & Chemical Networks
May 14, 2025
Why ASO Technology?
Apr 30, 2025
Connor Dalby's Story: n-Lorem Patient #001 with Kelley Dalby and Dr. Olivia Kim-McManus
Apr 16, 2025
Our Mission is Personal with Sarah Glass
Apr 02, 2025
How Cells Phone a Friend: Local Communication
Mar 19, 2025
How Cells Phone a Friend: Long Distance Communication
Mar 05, 2025
Rosie’s Story: A Nano-rare Treatment Pioneer
Feb 19, 2025
Sloane's Story: A Shared Medicine
Feb 05, 2025
5-years of n-Lorem: What Have We Learned?
Jan 22, 2025
I Sing the Body Electric
Jan 08, 2025
Q&A - 2024 Nano-rare Patient Colloquium Recap
Dec 18, 2024
Best of the 2024 Nano-rare Patient Colloquium
Dec 04, 2024
Susannah's Progress: Two Years of ASO Treatment with Dr. Jennifer Bain and Luke Rosen
Oct 16, 2024
Sneak Peek of the 2024 Nano-rare Patient Colloquium
Oct 02, 2024
The Building Blocks of What's Possible with David Butler, Ph.D.
Sep 18, 2024
Knowledge is Power: Part 2
Sep 03, 2024
Knowledge is Power: Part 1
Aug 21, 2024
Adopting a Rare Son with Paul Compton
Aug 07, 2024
Ion Channel Mutations: The Complexities of Treatment
Jul 24, 2024
Why We Dose Intrathecally
Jul 10, 2024
Behind the ASO Design and Discovery with Konstantina Skourti-Stathaki, Ph.D.
Jun 26, 2024
Best of the 2023 Nano-rare Patient Colloquium
Jun 12, 2024
The Hurdles of Insuring Patients with Nano-rare Mutations with Alan Lotvin, M.D.
May 29, 2024
Anna’s Story of Hope and Help: FUS-ALS with Sonja Kämpfer and Dr. Neil Shneider
May 15, 2024
Mostyn’s Story: Mother’s Day Special with Zoe Hummel
May 01, 2024
Physicians and Institutions Transform the Lives of Nano-rare Patients with Olivia Kim-McManus, M.D.
Apr 17, 2024
Advanced Genetics Part 2
Apr 03, 2024
Advanced Genetics Part 1
Mar 20, 2024
Sharing Hope Through Storytelling & Connection with Shanna Tolbert
Mar 06, 2024
Our Mission is Personal with Sarah Glass
Feb 21, 2024
Q&A #2 with Patient Families
Feb 07, 2024
Everybody Lives with Dan Doctoroff
Jan 24, 2024
Best of the 2023 Nano-rare Patient Colloquium
Jan 10, 2024
How to Think About ”Risk” Part 2
Dec 13, 2023
How to Think About ”Risk” Part 1
Dec 06, 2023
Inheriting Huntington’s Disease and Aspiring to Prolong Lives with Jeff Carroll
Nov 29, 2023
Living a Longer, Healthier, and More Fun Life with Chip Wilson
Nov 08, 2023
Autopilot: The Autonomic Nervous System
Oct 18, 2023
Better Health, Brighter Future for Rare with Dan Curran
Oct 04, 2023
Sneak Peek of the 2023 Nano-rare Patient Colloquium
Sep 20, 2023
Liver: Diseases
Aug 23, 2023
Liver: The Master Chemist
Aug 09, 2023
Liver: Metabolic Magic
Jul 26, 2023
Bottling Hope
Jul 12, 2023
Pursuing Diagnoses and Sequencing
Jun 28, 2023
Lungs: Heavy Breathing — Diseases and Obstructions
Jun 14, 2023
Lungs: Defending Airways
May 31, 2023
One Year Anniversary: It Takes a Rare Community
May 17, 2023
Coming Together for the Nano-rare Patient
May 03, 2023
Q&A #1 with Patient Families
Apr 19, 2023
Bits and Bytes Help Streamline Bench to Bedside
Apr 05, 2023
Fostering Collaboration to Fight ALS
Mar 22, 2023
The Energy of Life
Mar 08, 2023
Everybody Lives
Feb 15, 2023
Cardiovascular System Part 4B: (The Spigot) Kidney Diseases
Feb 01, 2023
Cardiovascular System Part 4A: (The Spigot) Kidney Functions
Jan 18, 2023
Cardiovascular System Part 3: (The Pipes) Arteries and Veins
Jan 04, 2023
CROs and Their Role for Nano-rare
Dec 14, 2022
Cardiovascular System Part 2B: (The Pump) Heart Diseases
Nov 30, 2022
Cardiovascular System Part 2A: (The Pump) Heart Anatomy
Nov 16, 2022
Shifting Mindsets to Expedite Rare Treatments
Nov 02, 2022
Cardiovascular System Part 1: Blood
Oct 19, 2022
Coming Together for the Nano-rare Patient
Oct 05, 2022
Antisense (How We Do It at n-Lorem)
Sep 21, 2022
Anna’s Story of Hope and Help
Aug 31, 2022
Why ASO Technology
Aug 17, 2022
Advocating for Rare Patients
Aug 03, 2022
Drug Discovery Platforms
Jul 20, 2022
Clinical Trials for One Patient
Jul 06, 2022
How Drugs are Used
Jun 22, 2022
A Diagnostic Odyssey: The UDN and n-Lorem’s Roles
Jun 08, 2022
Biological Systems & Chemical Networks
May 25, 2022
What is n-Lorem?
May 25, 2022
Susannah’s Story with Dr. Wendy Chung and Luke Rosen
May 25, 2022
Patient Empowerment Program
May 16, 2022