Walt Whitman’s 1855 poem, I Sing the Body Electric, is a celebration of the human body and its intrinsic connection to the universe. During that era, scientists were just beginning to understand that humans are, indeed, electrical beings. Whitman’s deliberate use of the word "electric" in his tribute to the human body was quite remarkable, as the term was not widely used at the time and electricity for human use was still in the experimental stage. With that in mind, the poem’s title serves as both a poetic and scientific statement.

Many have compared great science to art, but we believe it is more akin to poetry. A poet distills intricate concepts, stories, and emotions into the most concise, impactful expression—cutting through the noise to reach the heart and soul of the matter. Similarly, great scientists achieve this with their work. Together, scientists and patients contribute their own verses to the epic poem of understanding known as science.

This episode of the Patient Empowerment Program podcast is proudly sponsored by Hongene Biotech. With more than 26 years of experience in the nucleic acid industry, Hongene is a specialized CDMO and raw materials supplier committed to providing high-quality and high value products and services with the best in class lead times.

Make Hope Possible and donate, today www.nlorem.org/donate

Episode sponsor: Hongene Biotech https://www.hongene.com/

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 anniversary, shares his candid reflections on the event, and dives into additional thoughts and questions that weren’t covered.

Do you have additional questions? Email podcast@nlorem.org.

Question Bank:

1. 2:15 How do you think the event went this year?
2. 6:05 Were observations of benefit expected in patients so quickly?
3. 9:47 What do you expect the number of patients treated to be next year?
4. 10:57 Do you have a message to supporters?
5. 12:30 Were there any disappointments from the colloquium?
6. 13:21 What are the most important things that n-Lorem has learned this year?
7. 16:13 Do you think n-Lorem’s processes will be outlined every year at the event?
8. 18:05 How is AI incorporated at n-Lorem?
9. 19:10 Does your recently announced deal with GondolaBio reflect the sustainability strategy discussed at the event?
10. 20:53 n-Lorem is celebrating 5 years in 2025. Did you expect the foundation to be where it is today?
11. 21:28 Does n-Lorem plan to expand into Europe and elsewhere?

Make hope possible with a donation.

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 every one of you who made the event such a success! For this special episode, we gathered the ‘Best’ clips from the event for you to learn from and enjoy.

To submit questions for our upcoming Q&A episode, email podcast@nlorem.org. We can’t wait to hear from you! 2024 Colloquium Recap

On this episode:

• 2:07 Daphne Graskewicz-Prado, ASO The Perilous Journey to Diagnosis and Treatment for Nano-rare
• 9:35 Ryan Strankowski and Dr, Nelson Leung, Ryan’s Journey and Clinical Experience
• 15:55 Luke Rosen, Megan Hedstrom, and Dr. Jennifer Bain, Susannah’s & Sloane’s Journeys and Unique Clinical Experiences
• 21:49 Kelley Dalby and Dr. Olivia Kim-McManus, Connor’s Journey and Clinical Experience
• 30:00 Dr. Julie Ziobro and Dr. Horacio Kaufmann, Building a Nano-rare Network and Managing Institutional Challenges
• 37:38 Dr. Andrew Lo and Dr. Alan Lotvin, Innovative Ways to Support Nano-rare
• 42:30 Dr. Toby Ferguson, Dr. Liz Berry-Kravis, and Dr. Eugene Shneider, Changing the World One Patient at a Time
• 47:30 Dr. Kate Dawson, What It Means to be a Parter with n-Lorem for Nano-rare
• 50:23 Dr. Stanley Crooke, Providing Hope for a Better Future, One Nano-rare Patient at a Time