Episode 69 | Kinevant Sciences is researching namilumab – a potential new drug for sarcoidosis

Kinevant Sciences is researching a potential new drug for sarcoidosis - namilumab – which inhibits one of the key proteins believed responsible for granuloma formation and persistence in sarcoidosis.

In Episode 69 of the FSR Sarc Fighter Podcast,  Kinevant CEO Bill Gerhart and Director of Patient Advocacy, Rayne Rodgers discuss the status of namilumab, and how you as a sarcoidosis patient can participate in the Phase 2 clinical trial, RESOLVE-Lung.

Show Notes

• www.kinevant.com
• www.sarcoidosistrial.com
• Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
• ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
• ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

Below is a transcript of the interview.  It is auto-generated.  Please excuse typos and misspellings.

John Carlin: Coming up on the Sarkfighter podcast, an exciting new potential treatment for Sarcoidosis.

Bill Gerhart: This particular protein is required for granuloma formation and persistence and that if we inhibit it, we can potentially make a significant difference in Sarkidosis.

John Carlin: The folks at Cotton are ah, researching a drug that is showing promise and shutting off the body's damaging response to the triggers of Sarcoidosis.

Bill Gerhart: So that's what I mean about a precision medicine and why we're so excited about the promise and potential of this particular drug for Sarcodosis.

John Carlin: That interview is coming up.

Bill Gerhart: This is the Sarkfighter Podcast, living with sarchoidosis and other rare diseases. Here's your host, John Carlin.

John Carlin: Hello and welcome to the Sarkfighter Podcast. I'm your host, John Carlin and this episode of the FSR. Sarcfighter podcast is brought to you by kind of antsciences sponsor of the Resolve long pulmonary sarcoidosis clinical trial. For more information, please visit www.sarcodosentrial.com. I do this podcast to offer my fellow shark fighters hope and to help you connect with other shark patients to hear their stories, understand how Sarcidosis affects their lives. Hopefully that helps you understand what you are up against and what you need to do to overcome whether it's the disease or the effects of the medicine or both. Before we jump into our interview today, I want to give you an opportunity to become a leader in the Sarcodosis community by sharing your story. A lot of people have done it here on the podcast, but FSR now is seeking dynamic, dedicated individuals impacted by Sarcodosis. To work alongside the newly launched FSR Global Sarcoidosis Clinic Alliance, volunteers would apply to become community outreach leaders. That's a new title. Who will share their Sarcodosis story with the public to empower others and raise awareness, or apply to be support group leaders, which would be a different category of leadership to facilitate inperson support group meetings at FSR Global Alliance Clinic alliance member locations. Applications are due September 30, which is coming up quickly, about a month from the day that I'm recording here in late August of 2022. Learn more by visiting the FSR website and there will be a link in the show notes, but it's www.stopsarcodosis.org gscaleaders. But another thing that we do here on the Sark Fighter podcast and these actually tend to be the most popular episodes, is talk to researchers and people in the pharmaceutical space about progress in fighting Sarcoidosis. Kind of spread that out, didn't I? Sarcoidosis, well, Sarcoidosis, you know what I mean. Today I have for you a solid dose of hope. The pharmaceutical company kind of Am is working on a drug called Namiliumab and if all goes well, you'll be hearing a lot about it in the coming months and hopefully longer. Now probably if it gets through all the trials and so forth, it'll change and it'll have a, uh, commercial name. And if all goes according to plan and this becomes a drug that's available to Sarcodosis patients and a lot has to happen before that could be the case. Namil You MAB will be known by something else. But in the meantime, let's just get kind of used to hearing that. It's N-A-M-M-I-L-U-M-A-B namel. Umab, okay. And I'll be talking with Bill Gerhardt. He is the CEO of kind of Aunt and also Rainy Rogers, she is the director of Patient Advocacy about how this drug, if it makes it through clinical trials and it's done well so far, can shut down sarcoidosis by switching off the trigger that creates the body's autoimmune response, which, instead of helping, actually damages tissues in our bodies. That's what we call fibrosis. And often that damage is irreparable. And of course, sarcidosis is the snowflake disease. It's different in every single person. Most of the time, like 90%. It happens in the lungs. Sometimes it happens in the heart. So you have cardiac sarcoidosis, and the last thing you want is permanent damage from fibrosis in your heart. But also, uh, in a very small number of cases, it can be in the, uh, neurological system. Like in my case, I have it on my spinal cord. It can be in your eyes. It could be in your spleen, it could be on your skin. We've talked about many, many of those cases here on the sarcfighter podcast. And no matter where it shows up, it's not good. So today we'll be talking primarily about sarcodosis in the lungs, also a little bit about cardiac sarcidosis, but how Amelia MAB looks to be promising in those cases. All right, now, as you know, sarcidosis is essentially granulomas. Noncaseating granulomas is the term that we hear and use that's basically small clumps of immune cells clustering in a part of your body where a signal has indicated that the body needs to defend against an invader of some kind. But there is no invader. There is no insult. But the granulomas come anyway. And instead of helping, they do damage. And if left unchecked, there are all kinds of issues that can happen. And that's basically the story with sarcoidosis. So today on the podcast, we'll be hearing how kind of ant is making steady progress so far with this new drug, Namilium App. All right, now, Bill Gerhardt is so good, the CEO, at breaking down how the drug works in layman's terms, in a way that you can understand. You'll hear him use an analogy where he talks about the tumbling of dominoes. And if you've never been able to figure out what's going on in your body when he starts talking about how the dominoes tumble, you'll start to really understand what's going on with sarcrodosis in your body and then how, uh, this new drug potentially could stop the dominoes from tumbling and by doing that in a very specific, highly targeted kind of way. Now, what I can tell you so far is that Namilia MAB has passed the phase one clinical trial. And the company is now recruiting people, including you, maybe for Phase Two. If that's successful, there will be Phase Three and then FDA approval. And we'll go over the timeline in the interview today. And as I mentioned a moment ago, you may have a role in this. There is a strong need for people to sign on for the trial, and Bill and Rainey will be sharing information about how you can do that. And I can tell you it is not just happening in the United States. So there will be opportunities for people all around the world to potentially participate in this. So maybe you're one of those people who are suffering the effects of prednisone, maybe long term exposure to prednisone, or you're dealing with methotrexate. And a lot of people's bodies don't react well to methotrexate. And, for instance, I know mine didn't, and you're tired of it. So maybe you're wondering where you would go to participate. How would you sign up for this? How would you just get more information about it? And all of that is coming up here on the FSR Stark Fighter Podcast.

Bill Gerhart: Uh.

Speaker C: M um.

John Carlin: Hi.

John Carlin: I hope you're enjoying the Stark fighter podcast.

John Carlin: You may be wondering, what can I do to help?

John Carlin: How can I be a part of the Sarquidosis solution?

John Carlin: It's simple.

John Carlin: Make a donation to Kicks, kick in to stop Sarcidosis.

John Carlin: 100% of the money goes to the.

John Carlin: Foundation for Sarcidosis Research.

John Carlin: Look for a link in the show.

John Carlin: Notes of the Sarfighter Podcast. A reminder from FSR. Over the past year, with generous support from the community, FSR has made incredible progress in efforts to accelerate Sarcodosis research and deliver responsive patient support. Programming spotlighting Sarcodosis to hashtag make it visible. FSR's 2022 update that provides an inside look at the incredible progress made in the last year, as well as upcoming initiatives in the Sarcoidosis world.

John Carlin: So if you want to know more.

John Carlin: About that, visit the FSR website and read the update and learn how your support can help stop Sarcoidosis.

John Carlin: Welcome back to the Sark Fighter Podcast. And joining me now is Bill Gerhardt. He is the CEO of kind of ant. And Randy Rogers. She is the Director of Patient Advocacy as well. Guys, thank you for joining me here on the podcast.

Bill Gerhart: It's great to be here, John.

John Carlin: Uh, yeah, we have a lot to talk about today and some exciting research which could have some fantastic results for people with Sarcoidosis. And Bill, I know you're going to be fielding a lot of these questions in the beginning, and then Rainy will get t