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Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in applying generative AI, novel therapeutics and vaccines, and the changing dynamics in the medical and healthcare environment. One focus is on how providers, pharmaceutical companies, and payers are empowering patients.  In addition, conversations are often about how providers, care facilities, pharmaceutical companies, and payers are being empowered by technology to improve patient outcomes and reduce friction across the healthcare landscape.

Popular Topics

  • Virtual and digital health
  • Use of AI, ML, and LLM in healthcare and drug discovery, development, trials
  • Value-based healthcare 
  • Precision and stratified medicine
  • Integration of digital technology into existing workflow and procedures 
  • Next-generation immuno, cell, and gene therapies
  • Vaccines
  • Biomarkers, sequencing, and imaging
  • Rare diseases
  • MedTech and medical devices
  • Clinical trials
  • Addressing Social Determinants of Health
  • Treating chronic conditions like obesity and pain
  • Clinician and staff burnout

The audience includes life science leaders, researchers, medical professionals, patient advocates, digital health entrepreneurs, patients, caregivers, healthcare solution providers, students, journalists, and investors. 


Check out our new EmpoweredPatient.Solutions site where you can quickly search all of the Empowered Patient Podcast interviews by any word or phrase to identify useful resources, potential partners, and insights about the life sciences landscape.

Empowered Patient Solutions

May 24, 2023

Kyle Filkins and Kris Napper were both born with SMA, spinal muscular atrophy. Meeting as kids at The Muscular Dystrophy Association summer camp, they have developed a friendship and a documentary. After beginning the use of the drug Evrysdi, their rare genetic disease stopped progressing, and the oral form of this medication allowed them to avoid spinal injections. Now in their thirties, Kris and Kyle are advocating for the community of those with SMA, working on their documentary, and looking forward to more adventures. 

Kris explains, "Just shortly before Evrysdi was released and made available, there was another drug called Spinraza that was the first treatment ever for our disability. It was a spinal injection, which poses some complications as far as it's a procedure with some risk. It can be painful, and there's the risk of hitting nerves and causing damage. It's not the most fun thing to go through, but it was beneficial. So I was doing that."

"So for young children, just being diagnosed can be life-changing because you can stop that progression before it really hits. For us, we've already had significant progression. Still, hopefully, this will stop it where it is, and we'll be able to continue our lives for the foreseeable future, a lot better and longer than originally anticipated."

Kyle elaborates, "Before I was on any type of therapy, I would go to bed one day able to do something, and I'd wake up the day after not being able to do that. And it would never come back. And it's pretty great to be able to go to bed and sleep securely knowing that what I did today I can, for the most part, probably do tomorrow. It's definitely life-changing. That's for sure."

"There's been a lot of people interested in this story. Kind of piggybacking here on what Napper said, at the outset, it was really kind of just a budget film and like, "Oh, maybe they'll do cool activities and make jokes and stuff." But then with the advent of this therapy and specifically Evrysdi, that's really changed the outlook of the scope of the film, and for the better, as Napper said."

 @KKtheFilm #SMA #SpinalMuscularAtrophy #MuscularDystrophy #RareDisease #Evrysdi

Listen to the podcast here

Kris and Kyle