Episode 1: Two Institutions, One Powerful Event

Jack Faris (00:04):

Hello and welcome to our podcast, I Science, rare Disease, real Progress. I’m Jack Farris, CEO of Pacific Northwest Research Institute, and also proud father of my co-host Anna.

Anna Faris (00:19):

That’s me, Anna Faris, actor, producer, and yes, Jack’s daughter, which means I have had a front row seat to his science enthusiasm for quite a while.

Jack Faris (00:30):

Some might call it enthusiasm. Others might say, I’ve been known to go on a few passionate tangents about how genetics can improve lives for countless people.

Anna Faris (00:40):

Well, either way, you’ve definitely made science a big part of our lives, and I love that we get to share these conversations together. Dad,

Jack Faris (00:47):

This series was recorded at PNRI’s 2025 Rare Disease Day Symposium, an amazing day where advocate, scientists, clinicians, students, and industry leaders all came together with one goal to accelerate diagnosis, improve treatment and advanced discovery for thousands of rare diseases, and we’re sharing some of the most powerful conversations from that day.

Anna Faris (01:16):

In this episode of PNRI Science:  Rare Disease Real Progress, we hear from two leaders behind the scenes of the Rare Disease Day Symposium. My dad, Dr. Jack Farris, CEO of PNRI, and Dr. Victoria Gallo, Chief Scientific Officer at Seattle Children’s Research Institute. They talk about what it takes to build real momentum in rare disease research and why collaboration across institutions is so essential.

Jack Faris (01:52):

I’m Jack Faris. I’m the CEO of Pacific Northwest Research Institute, and I’m here to gather information, insights, knowledge, and inspiration. We are at the Seattle Children’s Research Institute where we PNRI and Seattle Children’s, our collaborating to co-host the spectacular symposium of genetic scientists, researchers, practitioners, and patient advocates to explore how we can advance the frontier of research on rare diseases that afflict 30 million families in America and comprise seven to 10,000 to maybe as many as 17,000 rare diseases. So rare diseases are individually rare, but they are not rare as a category. I’ve read recently in a column by Tom Friedman who’s pretty authoritative that this iPhone not only could not be made by one individual, it takes thousands of companies and millions of people in more than 50 countries to make an iPhone. Well, this rare disease research trying to crack some of the toughest diseases that devastate families and children, that’s way more complicated really than an iPhone.

Jack Faris (03:18):

And so I think of this as being a colossal and very heartfelt human enterprise. The people around the world are coming together to find ways to understand, diagnose in many cases now, treat and even sometimes prevent these terrible diseases. I am super hopeful and super inspired, and it’s worth noting that we are able to do this because of the generosity of our donors and our sponsors. We are not, in this case, reliant on federal funds. We’re deeply grateful for the federal research support we’ve gotten in the past, but we increasingly are finding ourselves needing to think about other sources of supporting science that must go forward, and we absolutely intend for our science to keep going forward. Rare disease research is shaping the way in which almost all biomedical research will be carried forward in the future, in this highly collaborative process of engaging practitioners, researchers, people who live with it every single day and supporters. So it’s again, a just phenomenal human enterprise.

Jack Faris (04:34):

Our theme for this event is Accelerating discovery Together. The technologies are enabling us to go faster, but also the increasingly interconnectedness in the collaborations are making possible sharing of ideas, sharing of information and data. And there’s no question that what’s happened the past 10 years is going to be outpaced by far over the next 10 years. So it’s a time for hope, enthusiasm, and inspiration. The promise of tomorrow is really unbounded. I plan in my closing remarks to invite everyone present to raise their hand if they have learned something significant. I expect that every hand will go up. I will ask if they have met someone who will be important to them in their future, work in life. And I expect just about every hand to go up. So I’m sure it’s successful from that standpoint. Sharing information, making connections, and we’ll build on this into the future. This is not a one-time event. We’ll do this again next year. My remarks include save the date, February 27th, 2026,

Anna Faris (05:49):

A message from one of our rare Disease day sponsors. Because RETT Syndrome presents with a heterogeneous constellation of symptoms and comorbidities that evolve over time, it is important that all members of the multidisciplinary team are connected. Watch and listen as key RETT Syndrome experts discuss treatment strategies in an engaging video series geared specifically toward healthcare providers. Visit. LearnaboutRETT.com. R-E-T-T.com. To watch the expert testimonial video series. LearnaboutRETT.com.

Victorio Gallo (06:33):

I’m Victorio Gallo. I’m Chief Scientific Officer at Seattle Children’s. I am a neuroscientist, a developmental neuroscientist, and today I am here because I am one of the organizers together with the Pacific Northwest Research Institute. This is a very important event for Seattle Children’s, for PNRI, for our community, for our families, for researchers, for clinicians at the hospital. Our goal was really, first of all, to demonstrate the commitment of our institutions to rare disease research because we all need each other. We all need to work together because our researchers need families, and our families need our clinicians to take care of their kids. And researchers can not only develop new innovative therapies, but also most importantly, understanding of these very rare conditions that affect millions of kids around the globe. But it’s really important to think about how Seattle Children’s can provide not only excellence in research, but also excellence in clinical care. We need hospitals that are specialized for children, particularly for these very complex diseases. We need to have multiple specialties. We have to have excellence in multiple specialties because these disorders affect so many organs and affects children’s at so many different levels that we need to have clinicians from different subspecialties come together and be able to not only diagnose, but also to develop the best care for these very complex cases that can only be taken care of in specialized pediatric centers.

Victorio Gallo (08:29):

For example, here at Seattle Children’s, we are at the forefront for cystic fibrosis. We have generated three new drugs that now extend the life of children with cystic fibrosis to adulthood. It’s completely unprecedented. Before kids with cystic fibrosis would die by the age of 20, and now their lives are extended to adulthood. They have children and they live practically a normal life. So this shows how this unique partnership between advocacy and families and drug companies and researchers can create new therapeutic interventions, new therapies for rare disorders like cystic fibrosis. So there have been so many sessions that have been really interesting, but I think there is nothing like actually seeing examples of these babies or these children that have been diagnosed with these rare disease very early on in their lives. And because of gene therapy and other therapeutic interventions, they grow later as children with no challenges or with very little challenges, and the disease has been resolved, partially resolved, or even cured. So I think those are clearly the moments that I will always remember is seeing the images of these babies and these children is quite amazing.

Victorio Gallo (10:07):

We need families to bring to our attention new cases, and children have rare genetic disorders. We need families to participate to not only testing, but also to our clinical trials. And we need families to advocate with our legislative officials about the need for funding for research, because it’s only with research that we can develop new therapeutic interventions. It’s really hard to do research, and it’s really hard to take care of. Children have so many difficult disorders, and it takes really special dedication and commitment to these children. So I hope that our clinicians and our geneticists and our researchers feel empowered, but also positive about the impact that they’re making on the lives of these children and their families. I also hope they live this day with having met more people. So they have met new colleagues and they created new collaborations, but also they feel the support of our institutions because it’s really important for our clinicians and researchers to experience and to feel that our institutions, Seattle Children’s, and PNRI are committed to them because changing the lives of children is really changing the lives of adults, of future adults. So this is really important work that we’re doing every day.

Anna Faris (11:48):

Thanks so much for joining my dad and me for this episode of PNRI Science: Rare Disease, Real Progress. These conversations really stuck with us, and we hope they sparked something for you too. If you’d like to learn more about PNRI or stay connected to the work, just head to pnri.org/connect. You can sign up for updates, join an event, or even come tour the lab.

Jack Faris (12:15):

Whether you’re in the lab, in the clinic, or at home, navigating life with a loved one who has a rare disease. This work touches all of us, and it moves forward because of people like you,

Anna Faris (12:27):

Because in rare disease, a diagnosis isn’t the end of the story. It’s the start of something courageous, collaborative, and hopeful.

Jack Faris (12:36):

Thanks so much for listening. We’re so glad you’re with us. A very warm and deeply appreciative thanks to all of our sponsors and supporters who made Rare Disease Day possible. It was a smashing success, and if we make a breakthrough, it will benefit generations and generations to come. So with that, let me say particular thanks to Platinum sponsor, Trysk Print Solutions and Acadia Pharmaceuticals. Thank you also to our gold sponsors, Ultragenyx, K&L Gates, and Perkins Coie. We’re deeply grateful to our silver sponsors, Novo Nordisk, Sanofi Ipsen Farming, Bruker Spatial Biology, SpringWorks Therapeutics, El Gaucho, and Knobbe Martens. And thank you to our bronze sponsors, Biogen, Nabsys, Dorsey and Whitney, Medlife Discoveries, and the Tall Chef. And thank you to our media sponsors, Science in Seattle and Audiotocracy. Because of this generous support, we were able to host a fantastic rare disease day scientific symposium for over 200 people. And now that information is extended to a larger audience via these podcasts, behind every sponsorship there is a person or a team of people who support the idea and go to bat for it and make it happen. So thank you to all of you.