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PODCAST

PNRI Science: Rare Disease, Real Progress

We"re back with Season 2 of our podcast PNRI Science–this time recorded live at PNRI"s 2025 Rare Disease Day symposium. It was a day full of energy, insight, and shared purpose, as scientists, clinicians, advocates, and industry leaders came together to accelerate rare disease research and treatment. Hosted by Jack Faris, CEO of the Pacific Northwest Research Institute, and his daughter, actor and producer Anna Faris, this season captures personal stories and fresh perspectives from across the rare

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All Episodes

12:04

Episode 4: Industry Partner Perspectives

PNRI Science: Rare Disease, Real Progress ·

2025/05/27

“In the rare disease space, zebras really do exist. They need care just like everybody else.” — Fran Akoh, Ultragenyx Pharmaceutical In the final episode of our Rare Disease Day 2025 podcast series, we hear from two industry leaders who are helping connect scientific discovery to real-world impact. Fran Akoh, Medical Science Liaison at Ultragenyx Pharmaceutical, shares how her team is working to develop the first approved therapy for osteogenesis imperfecta (brittle bone disease). She reflects on

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23:26

Episode 3: Voices From the Bench and the Bedside

PNRI Science: Rare Disease, Real Progress ·

2025/05/19

“To really understand these diseases, you need to work together—clinicians, researchers, families. That’s how we make progress.” — Jessica Ayers What drives scientists and clinicians to dedicate their careers to rare disease research? In this episode of PNRI Science: Rare Disease, Real Progress, we hear from individuals at every stage of their careers—from undergraduates to seasoned researchers and medical professionals—who share what fuels their passion, what challenges they face, and how

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18:57

Episode 2: Driven by Diagnosis

PNRI Science: Rare Disease, Real Progress ·

2025/05/12

"What is stopping Owen from having a treatment is funding—not science." —Lindsay Topping Scheutz How do personal stories fuel scientific progress in the world of rare diseases? In this episode of PNRI Science: Rare Disease, Real Progress, we hear from three powerful advocates who have turned personal experience into lasting impact. Daniel Barvin shares how learning he carried a genetic mutation linked to ALS and FTD led him to launch End the Legacy and help bring a promising new therapy to

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14:15

Episode 1: Two Institutions, One Powerful Event

PNRI Science: Rare Disease, Real Progress ·

2025/05/05

"Rare disease research is shaping the way almost all biomedical research will be carried forward in the future." — Dr. Jack Faris What does it take to make real progress in the fight against rare diseases? In this episode of PNRI: Rare Disease, Real Progress, PNRI CEO Jack Faris and his daughter and co-host, Anna Faris, reflect on the energy and discoveries presented at the 2025 Rare Disease Day Symposium. Joined by special guest Dr. Vittorio Gallo, Chief Scientific Officer at Seattle Children’s

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02:12

Introducing Season 2: Voices From Rare Disease Day 2025

PNRI Science: Rare Disease, Real Progress ·

2025/05/04

In Season 2, we’re bringing you something special—conversations recorded live at PNRI’s 2025 Rare Disease Day symposium. It was a day full of energy, insight, and shared purpose, as scientists, clinicians, advocates, and industry leaders came together to accelerate rare disease research and treatment. Hosted by Jack Faris, CEO of the Pacific Northwest Research Institute, and his daughter, actor and producer Anna Faris, this season captures personal stories and fresh perspectives from across the rare

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45:56

Episode 6: Dr. Aimée Dudley: Patients + Researchers =...

PNRI Science: Rare Disease, Real Progress ·

2024/10/08

“One thing that is surprising to people is that there's a lot of creativity in science. There are a million different ways to answer a question.” - Dr. Aimée Dudley In this episode of PNRI Science: Mystery and Discovery, PNRI CEO Jack Faris interviews PNRI’s Senior Investigator and Interim Chief Scientific Officer, Dr. Aimée Dudley, about how her lab harnesses the awesome power of yeast to pinpoint which genetic variants cause disease. Her lab’s research is used by physicians across the nation to

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38:42

Episode 5: Dr. Cláudia Carvalho: Science is a Social...

PNRI Science: Rare Disease, Real Progress ·

2024/09/24

“Rare diseases are leading an interesting revolution in medical science. They are leading the field to try new approaches that can help these families.” - Dr. Cláudia Carvalho In this episode of PNRI Science: Mystery and Discovery, PNRI CEO Jack Faris interviews PNRI’s Assistant Investigator, Dr. Cláudia Carvalho, about her international collaborations working together to solve the unsolved case of rare diseases. Her lab digs deep into the human genome to locate the structural variants in DNA that

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42:57

Episode 4: Dr. Michael Metzger: Future of Healthcare...

PNRI Science: Rare Disease, Real Progress ·

2024/09/10

“If there's a way for an animal to evolve to block cancer, I want to know what that is. I think it has the potential to be really useful for humans.” - Dr. Michael Metzger In this episode of PNRI Science: Mystery and Discovery, PNRI CEO Jack Faris interviews PNRI’s Assistant Investigator, Dr. Michael Metzger, about contagious cancer in clams. This cancer is over 400 years old and might hold the key to humans resisting cancer. We might all be thanking a clam for saving us from cancer in the future

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48:22

Episode 3: Dr. Bill Hagopian and Michael Killian:...

PNRI Science: Rare Disease, Real Progress ·

2024/08/27

“Studying viruses is like tracking ghosts. It's incredibly difficult work.” - Dr. Bill Hagopian In this episode of PNRI Science: Mystery and Discovery, PNRI CEO Jack Faris interviews the TEDDY Study’s Principal Investigator Dr. Bill Hagopian and PNRI’s TEDDY Clinical Research Manager Michael Killian who have led the massive international study, The Environmental Determinants of Diabetes in the Young, or “TEDDY,” for more than 20 years. As part of the study, PNRI has been collecting samples from

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45:38

Episode 2: Dr. Lisa Stubbs: Demystifying Nature vs....

PNRI Science: Rare Disease, Real Progress ·

2024/08/13

Dr. Lisa Stubbs: Demystifying Nature vs. Nurture “Genetics give you susceptibilities–that you are prone to this kind of problem. But you don't develop that kind of problem unless you're exposed to the right environment.” - Dr. Lisa Stubbs In this episode of PNRI Science: Mystery and Discovery, PNRI CEO Jack Faris interviews PNRI Senior Investigator Dr. Lisa Stubbs about the intersection of nature versus nature and how chronic stress and genetics influence pregnancy outcomes. Lisa Stubbs, PhD, is a

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57:32

Episode 1: Driven by the Question with Rick McLaughlin

PNRI Science: Rare Disease, Real Progress ·

2024/07/30

“To do this job, you must be curious .... it's really that curiosity, that drive to know, what is the answer to this question? Is this an interesting question? Is this an important question?” – Dr. Rick McLaughlin In this episode of PNRI Science: Mystery and Discovery, PNRI CEO Jack Faris interviews PNRI Assistant Investigator Dr. Rick McLaughlin on what your genome and an IKEA bookshelf have in common, zombie parasites in our DNA, "junk" DNA, and what makes Darwin smile. Rick McLaughlin, PhD, is

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01:27

PNRI Science: Mystery & Discovery

PNRI Science: Rare Disease, Real Progress ·

2024/07/11

PNRI Science: Mystery & Discovery goes beyond the jargon to explore the passion and people at the forefront of genetic research. Our host, Jack Faris, is CEO of Pacific Northwest Research Institute, a 68-year-old genetics and genomics research institute in Seattle. He is also a regular guy who happens to spend his days around really smart people. Jack interviews PNRI’s brilliant scientists to share what excites them about genetic research, what inspired them to become scientists, and those myths

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