Sneak Peek of the 2023 Nano-rare Patient Colloquium

September 20, 2023


Background information on the inspiration for n-Lorem, our hurdles and joys since inception, and a quick preview of the Colloquium

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. 

On This Episode We Discuss:

  • 2:20 Why pursue antisense in the early days of the technology?
  • 7:56 Did being a young scientist who could dedicate his career to pioneering antisense technology play a role in your choice to pursue the technology?
  • 10:01 Why start n-Lorem after retirement when you were initially supposed to allocate your time to reading, writing, and continuing to do science firsthand?
  • 12:00 Ionis is a for-profit organization. n-Lorem is a non-profit. Why did you choose to make that decision?
  • 13:09 Is the tension of focusing on the interests of shareholders taken out of the equation with n-Lorem being non-profit?
  • 17:45 How many applications has n-Lorem received to date?
  • 18:38 Does every IND/program represent an individual patient?
  • 19:38 Are you building a database by gathering information to help future patients who are amendable to ASOs? What about pioneer patients?
  • 22:41 How is the n-Lorem database being used? Is there a central database available?
  • 24:44 Has there been criticism for not making a central database available?
  • 26:33 Have you had to turn away patient applications?
  • 28:04 Why have the Nano-rare Patient Colloquium in person and what do you hope to gain from it?
  • 29:08 What is planned for the Colloquium?
  • 30:53 If you’re a drug developer, researcher, or company looking at health, how is time best spent – helping the vast majority of people or helping one person that has no other options?

Watch on YouTube:

Brady Huggett is the enterprise editor at Spectrum, where he writes and edits features and long-form projects, and hosts the neuroscience podcast Synaptic. Before joining Spectrum, he served as business editor at Nature Biotechnology. Brady has a B.S. in biology from Wake Forest University in Winston-Salem, North Carolina, and an M.A. in journalism from the University of North Carolina at Chapel Hill.

Dr. Stanley Crooke is a scientist, a physician, an entrepreneur and the father of antisense technology. Dr. Crooke is responsible for driving the development of antisense or ASO technology, an RNA-targeted technology responsible for the commercialization of three best- and first-in class medicines and more than 40 drugs in development. In 2020, Stan formed n-Lorem to use this powerful technology to develop experimental personalized ASO medicines for nano-rare patients (1 to 30 patients worldwide) for free, for life.


Hosted by: Dr. Stan Crooke.
Videographer: Jon Magnuson of Mighty One Productions.
Producers: Kim Butler, Colin Delaney, Kira Dineen, Jon Magnuson, Andrew Serrano and Amy Williford.

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Mentioned in this episode:

Listen to the story of Stan Crooke’s life. Hope lies in dreams, a Nature Biotechnology podcast series hosted by Brady Huggett. Stan Crooke rose from poverty to found a company that pioneered antisense drugs. After decades of struggle and years of public doubt, the company created a treatment that has saved thousands of children from the brutal disease, spinal muscular atrophy.

Listen to our next interview:

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