UA-110414037-1 Improbable Developments

IMPROBABLE DEVELOPMENTS

The Human Stories Behind the Medicines

Episode 3

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Published on:

18th Nov 2019

2:00pm

Hope Can Be Curative

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Today we hear from David Pearce, PhD, President of Innovation and Research, Sanford Health and Vice Chair, Consortium Assembly, International Rare Disease Research Consortium (IRDiRC)

Dr. Pearce’s rare disease background emanates from publishing over 100 research papers on Batten Disease.  David talks to us about how he got involved in Batten Disease research and where that work has taken him since.  

In his role as President of Innovation and Research at Sanford he is responsible for overseeing the development of research programs across Sanford’s nine-state footprint, including more than 450 researchers, eight research centers and more than 300 ongoing clinical trials. This includes a national registry for rare diseases, Coordination of Rare Diseases at Sanford (CoRDS).

The International Rare Disease Research Consortium comprises more than 50 international entities.  

Episode 2

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Published on:

9th Oct 2019

1:15pm

Kyle Bryant: Remember Why We Are Doing All This

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We welcome Kyle Bryant of the Friedreich’s Ataxia Research Alliance (FARA) to discuss his journey as a patient with Friedreich’s Ataxia (FA), as an active patient leader, and in his job as a liaison between the FA community and researchers.

After being diagnosed with FA when only 17 years old, Kyle has dedicated his life to helping other people with FA and exemplifying the adage “Life is how we react to it!” He has reacted by becoming a long-distance bike rider, podcast host, author, and full-time patient advocate. 

Kyle opens up about his drive to help others deal with the challenges of life with FA and other disorders. It started when he wrote a daily blog during his first big bike ride from San Diego to Memphis. The comments and responses to this blog made him realize “Oh my gosh, we can make a real impact” by giving people hope and community. It was life-changing for him.

Kyle has a very healthy perspective on participation in clinical trials. He talks about his understanding that he may be just one small “mouse” in a study, but he can be the most powerful mouse that ever lived, an essential ingredient to make a drug a reality.  

Kyle Bryant is the author of Shifting Into High Gear: One Man’s Diagnosis and the Epic Bike Ride that Taught Him What Matters. He is also the co-host of The Two Disabled Dudes Podcast (@2DDPodcast) with his friend Sean Baumstark. He and Sean are featured in the award-winning documentary The Ataxian.  

Episode 1

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Published on:

9th Sep 2019

5:00am

David Fajgenbaum, MD, MBA, MSC, FCPP

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We are honored to have Dr. David Fajgenbaum as our first guest on Improbable Developments. His story is intense. Before he even earned is medical degree, he was faced by a rare life-threatening illness for which there was no treatment, let alone cure.

Tune in to hear how he took a novel approach to consolidating the scarce knowledge about his condition, Idiopathic Multi-Centric Castleman's Disease that helped him find a treatment that quite literally allowed him to be on our podcast.

His new goal is to replicate that approach for patients with other rare disorders.

We also get to hear about his book,  Chasing My Cure: A Doctor's Race to Turn Hope Into Action which comes out on September 10, 2019.

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Published on:

1st Sep 2019

2:30pm

Welcome to Improbable Developments!

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In this, our first episode, Kevin lays out the objectives and plan for the Improbable Developments podcast. He also shares a personal story about a medicine he worked on earlier in his career.

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About the Podcast

Improbable Developments
The human stories behind the medicines
Every medicine in your pharmacy has a human story behind it. Real people doing real work and living real lives.

We all have romantic ideas about scientists working late into the evening or doctors dropping everything to answer a phone call about a patient. You can almost envision the moment when one of those researchers finally solves an intellectual puzzle and leaps into action. Their eyes go from an empty stare to an alert laser-like focus. They sit a bit taller and start to read frantically. I am sure you’ve seen those movies too.

But is it real? Is that how it really happens?

That’s what we intend to explore in “Improbable Developments.”

Each month we will talk to someone who was or is in the trenches of biopharma R&D and let them tell their story. We’ll be talking about medicines you may know and some that never saw the light of day. We’ll talk to people involved at the bench in the earliest stages through to those who run the clinical trials and present the data to regulators around the world. We'll even be talking to patients who have joined the effort.

The science of drug discovery and development creates a rich landscape for all sorts of stories to unfold. The technical challenges, the urgency to help patients, career aspirations, the fight for resources, and many other factors all work together to produce a complex and enthralling human drama. In our monthly discussions, we will look at this from many different angles.

Through our discussions, we hope to give you a real appreciation for the types of people behind the medicines you take and the medical devices you may use. You’ll get to know each of them a little bit and start to understand what they have in common and how different and unique they really are.

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About your hosts

Heather McCullen

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Kevin Freiert

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Jamie Roger

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