Susannah’s Story with Dr. Wendy Chung and Luke Rosen

What this episode covers

Dr. Stan Crooke talks to Luke Rosen and Wendy Chung about Luke’s seven-year old daughter, Susannah. Susannah has a genetic mutation that is progressive and debilitating. Susannah is also an n-Lorem patient, which means that we are hard at work discovering and developing a personalized experimental ASO medicine just for her, for her specific mutation. Her doctor, Wendy Chung, and Luke discuss Susannah’s life, her diagnosis and disease progression and the hope that they both have that there will be something that will make life better for her.

Share this episode

Similar Episodes

I'm ok

Mar 26, 2026 ·1m

REMIX: Why we over-shop and compulsively acquire, and how to stop, with Dr Jan Eppingstall

Jan 9, 2026 ·61m

REMIX: OCD and hoarding disorder with Jenna Overbaugh

Jan 2, 2026 ·47m

REMIX: Therapy and hoarding disorder - what are the options? With Dr Jan Eppingstall

Dec 26, 2025 ·78m

REMIX: ADHD and hoarding disorder with Professor Sharon Morein

Dec 21, 2025 ·46m

#207 13 actionable pieces of mental health advice from six former podcast guests

Dec 12, 2025 ·53m

Similar Podcasts

MG Show MG Show The MG Show, hosted by Jeffrey Pedersen and Shannon Townsend, is a leading alternative media platform dedicated to uncovering the truth behind today’s most pressing political issues. Launched in 2019, the show has grown exponentially, offering unfiltered insights, comprehensive research, and real-time analysis. With a commitment to independent journalism and factual integrity, the MG Show empowers its audience with knowledge and encourages active participation in the political discourse. Ask A Spaceman Archives - 365 Days of Astronomy Ask A Spaceman Archives - 365 Days of Astronomy Podcasting Astronomy Every Day of the Year French Your Way Jessica: Native French teacher founder of French Your Way Boost your French listening skills and test your comprehension with this one of a kind series of podcasts. Get the chance to listen to a real conversation between native speakers talking at normal speed AND customise your learning experience through carefully designed sets of questions (2 levels of difficulty) available for download at www.frenchvoicespodcast.com. All interviews also come with the transcript. French teacher Jessica interviews native speakers of French from around the world who share a bit of their life and passion. Where else would you meet in one same place a French yoga teacher based in Melbourne, a soap manufacturer from Provence, or a couple cycling around the world? That Hoarder: Overcome Compulsive Hoarding That Hoarder Hoarding disorder is stigmatised and people who hoard feel vast amounts of shame. This podcast began life as an audio diary, an anonymous outlet for somebody with this weird condition. That Hoarder speaks about her experiences living with compulsive hoarding, she interviews therapists, academics, researchers, children of hoarders, professional organisers and influencers, and she shares insight and tips for others with the problem. Listened to by people who hoard as well as those who love them and those who work with them, Overcome Compulsive Hoarding with That Hoarder aims to shatter the stigma, share the truth and speak openly and honestly to improve lives.

Frequently Asked Questions

How long is this episode of Patient Empowerment Program: A Rare Disease Podcast?

This episode is 49 minutes long.

When was this Patient Empowerment Program: A Rare Disease Podcast episode published?

This episode was published on May 25, 2022.

What is this episode about?

Dr. Stan Crooke talks to Luke Rosen and Wendy Chung about Luke’s seven-year old daughter, Susannah. Susannah has a genetic mutation that is progressive and debilitating. Susannah is also an n-Lorem patient, which means that we are hard at work...

Is there a transcript available for this episode?

Yes, a full transcript is available for this episode. You can read the complete transcript on the episode page.

Can I download this Patient Empowerment Program: A Rare Disease Podcast episode?

Yes, you can download this episode by clicking the download button on the episode player, or subscribe to the podcast in your preferred podcast app for automatic downloads.