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. 

• 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?

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.

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.

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We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.