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Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients.

Topics on the show include

  • the emergence of personalized medicine and breakthroughs in genomics
  • advances in biopharmaceuticals
  • age related diseases and aging in place
  • using big data from wearables and sensors
  • transparency in the medical marketplace
  • challenges for connected health entrepreneurs

The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors.

Aug 30, 2021

Karen Chen is the Chief Executive Officer of the Spinal Muscular Atrophy Foundation.  With a background in drug development having worked in pharma and biotech in neurodegenerative diseases like Alzheimer's and Parkinson's, Karen brings a deep understanding of the value of treating rare diseases that are genetically defined.

Karen explains, "The foundation is a little unusual as far as a nonprofit because we are really focused on our sole mission, which is to accelerate the development of treatments for SMA. And unlike other organizations, we're really not focused on raising awareness or raising funds as much as some of our sister SMA nonprofits. So we have really partnered with biotech and pharmaceutical companies to develop drugs for SMA. And SMA is one of the leading genetic causes of death in young children. It's actually the leading genetic killer of children."

"So even though there are three types, four if you include the adult form of SMA, it's all caused by the same underlying missing gene. The differences in severity are really a result of this backup gene that I talked about, SMN2."

#SMA #SpinalMuscularAtrophy #RareDisease #SMN2 #Evrysdi #Spinraza #Genentech #Biogen #SMAAwarenessMonth

SMAFoundation.org

Listen to the podcast here

SMA Foundation