The Lonely Pipette : helping scientists do better science

TLP #28 : Curing with a Community - David Fajgenbaum

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Episode notes

In this episode, we kick off our Season 3 guests with David Fajgenbaum who shares his extraordinary journey to cure himself from Castleman disease.

  • David shares his very personal story of searching for a cure to his own disease
  • He describes how having a vision for the future helped him to survive
  • He insists that patients can be part of the process and can be active collaborators in the search for cures
  • He pleads for a shift from an Investigator initiated model to a Community initiated model involving collaboration between researchers, clinicians and patients
  • David also insists that approved drugs could be used to treat additional diseases
  • He tells us about why and how he wrote a book, “Chasing My Cure” about his journey
  • He describes the value that good mentors bring
  • He advises to keep focused, surround yourself with good people, learn to delegate and to take important recruitment decisions
  • David recommends getting as much feedback as you can from many people


He mentioned these labs, scientists, institutions and companies

  • University of Pennsylvania School of Medicine : https://www.med.upenn.edu/
  • Georgetown University : https://www.georgetown.edu/
  • Castleman Disease Collaborative Network : https://cdcn.org/
  • Castleman Disease : https://rarediseases.org/rare-diseases/castlemans-disease/
  • University of Oxford : https://www.ox.ac.uk/
  • National Institutes of Health (NIH) : https://www.nih.gov/
  • Janet Woodcock from the FDA : https://en.wikipedia.org/wiki/Janet_Woodcock
  • Brian Wallach : https://en.wikipedia.org/wiki/Brian_Wallach
  • I am ALS : https://www.iamals.org/
  • Frits van Rhee : https://cdcn.org/leadership-team/frits-van-rhee/ | https://uams-triprofiles.uams.edu/profiles/display/127377
  • Sharon Terry : https://en.wikipedia.org/wiki/Sharon_F._Terry
  • Arthur Rubenstein : https://www.med.upenn.edu/endowedprofessorships/arthur-h-rubenstein-university-professorship.html
  • Benjamin Castleman : https://en.wikipedia.org/wiki/Benjamin_Castleman


To find out more about David and Every Cure visit these links 
X-Twitter  : @DavidFajgenbaum
Every Cure https://twitter.com/EveryCure
David’s LinkedIn https://www.linkedin.com/in/davidfajgenbaum/
Every Cure’s LinkedIn : https://www.linkedin.com/company/every-cure/
David’s Book “Chasing My Cure: A Doctor's Race to Turn Hope Into Action” : https://chasingmycure.com/

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More about the soundtrack :
Music by Amaria - Lovely Swindler https://soundcloud.com/amariamusique/