Improbable Developments Kevin Freiert

Rob Weker’s story is remarkable for many reasons.


First and foremost, he has beaten cancer.


Not once. Not twice. But three times.


Getting the third diagnosis, this time it was pancreatic cancer, really got his attention. Only 7% of pancreatic patients live beyond 5-years.


I met Rob at last year’s Patients as Partners (https://theconferenceforum.org/conferences/patients-as-partners/overview/) conference and really enjoyed his perspective. His plea was for the conference attendees to walk in his boots. And yes, he had those boots on stage. 


You see, Rob is also a veteran of pharmaceutical R&D. He had a deeper message for his professional colleagues. In his professional life, he turned his propensity for asking questions into a career looking at the process improvement and quality.


Rob is very methodical in how he analyzes problems – whether at work or as a patient. His experience has taught him that it is very important to keep asking questions until there are none. In this episode, he shares a few stories of how this has worked well for him as he battled for his life.


Obviously, on the health side, he has beaten the odds. He just passed the 5-year mark since his diagnosis.


And now he is turning his energy to bridge the gap between patients, industry, and the rest of healthcare.


You can read Rob’s blog on LinkedIn ( click here (https://www.linkedin.com/pulse/through-patient-lens-dont-rely-luck-pro-active-choose-robert-weker/) ) It’s about being proactive and not relying on luck.

This month listen to Dr. Carol Marzetta talk about how the urge to help other people has shaped her career and her life. From her earliest days as a Discovery Biologist, she has found he passion in work that tries to help people in need. She shares with us some stories about the emotional pendulum around some promising cholesterol lowering programs that did not make the grade.

She also opens up about the challenges managing a groundbreaking clinical program for Viagra®, including learning how devastating male erectile dysfunction could be to individuals and their families. While setbacks are expected in Discovery and management pressure is expected for a high-value clinical project, Carol always comes back to the need for helping people to keep her going.

In fact, after leaving industry, she spent years working with non-profits like the Bill and Melinda Gates Foundation to bring medicines and vaccines to children in the poorest of countries.

Although I have known her for years, the discussion reminded me of why I liked working with her so much. She was always there to help.

We’ve all been there. You are at a party and someone asks, “So, what do you do?” Dr. Kirsch always found it hard to explain his career as a discovery scientist. He decided to write a book about it.   (https://amzn.to/36j59ts)  is a colorful, fact-filled narrative history of the search for new medicines from our Neolithic forebears to the professionals of today, and from quinine and aspirin to Viagra, Prozac, and Lipitor.  


We talk to Dr. Kirsch about his own experiences as a scientist, the daunting odds of finding an actual medicine, and the additional human hurdles that can make these discoveries even harder. He also talks to us about the things he learned as he wrote  (https://amzn.to/36j59ts)  with his co-author Ogi Ogas, Ph.D.  


Credits:


Sound Design: Jacob Tompkins ( losstudiosnc@gmail.com (mailto:losstudiosnc@gmail.com) )  


Music: “Origins” Per Kilstofte  https://machinimasound.com/ (https://machinimasound.com/)  


“AS – Tribal O1” Aaron Spencer  https://machinimasound.com/ (https://machinimasound.com/)  


Graphic Design: Heather McCullen ( heathermccullen@salemoaks.com (mailto:heathermccullen@salemoaks.com) )  

Today we hear from David Pearce, PhD, President of Innovation and Research, IRDiRC (http://www.irdirc.org/) )


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 (https://research.sanfordhealth.org/rare-disease-registry) ).


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

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.

We are honored to have Dr. David Fajgenbaum as our first guest on Improbable Develoipments. 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.