In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis.
Show notes
The New FSR Initiative
In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis.
Show notes
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
The following is an Internet generated transcript of the interview. Please excuse spelling and grammatical errors.
John Carlin: welcome back to the Sarc Fighter podcast. I am so pleased today to have the people that make FSR absolutely run and operate here as guests today to talk about this new initiative. Our CEO, uh, Mary McGowan and Chief Strategy Officer Tricia Chivas are both here. Welcome to the podcast.
Mary McGowan: Thank you, John. It's always a pleasure to be a guest on your podcast.
Tricha Chivas: Thanks so much, John. We're excited to talk to you today.
John Carlin: So the email went out this week, and we're talking late June. In 2022, FSR has a new program that deals with how FSR will be recognizing endorsing recommending clinics. Mary, tell me how all that works and tell me the gist of this new announcement.
Mary McGowan: John, we're so excited this, week to have announced publicly this really exciting new initiative called the FSR Global Sarcodosis Clinic Alliance. The whole concept of this is to bring hospitals and Sarcodosis clinics together globally in the fight against Sarcodosis. So we were thrilled the very first presentation that we did was in March. We were, uh, hoping to launch this in January, but due to COVID, we couldn't for, um, obvious reasons, because the clinics were so engaged in taking care of COVID patients. And in relatively very short period of time, we are so thrilled that we had 22 esteemed founding members join us as they learned about this. Um, and we're continuing to accept founding, uh, members through September to continue to grow this and work with them as part of a leadership council. And, um, so anyway, this all developed because we, uh, saw this opportunity to be able to connect more closely with Sarcodosis clinics and hospitals. And after we had the vision for this, we actually sent out a survey to clinicians across the globe. Uh, and they, too, verified this opportunity and this need for bringing us all together to share best practices and to network both at the clinician and patient level. And that is why, uh, we decided to move forward with this extraordinary rare disease initiative.
John Carlin: Yeah, that is a lot, and there's so many things I want to unbundle here. But let's start with what are the ways that patients will be supported by this alliance? If I've got psychodosis, how does this help me?
Mary McGowan: Well, we want to ensure in every community across the globe that Sarcoidosis patients have access to the most up to date, uh, Sarcodosis information, education and support services. So what we're going to do is, through, uh, an application process, we're going to have Sarcoidosis patients apply to be peer led support group leaders. And we're going to host support group meetings monthly, uh, at institutions throughout the globe. In addition to that, some of the, uh, volunteers will receive training on how to be community educators and how to work with the media so that we can amplify, uh, the messaging about Sarcodosis about this rare disease throughout local communities, again, around the globe. So we're really excited to be recruiting for these leadership positions, and we're, uh, going to have ongoing trainings that are going to support these leaders and also provide opportunities for these leaders to network with each other. In other words, the, uh, other leaders across the globe in this effort to, uh, be able to provide these kinds of support services to patients.
John Carlin: So these leaders will be patients?
Mary McGowan: Yes, these leaders will be patients. We believe very strongly at FSR in the peer led leadership approach because it's, uh, really the patients who have the best understanding of what it's like living with Sarcodosis. And if we can empower them to, uh, be leaders of the support group sessions, then we believe that that has the strongest impact.
John Carlin: And do you foresee in a post covered world of these support groups would meet in person?
Mary McGowan: Yes, we do hope that they will be meeting shortly in person as the, uh, world hopefully continues to try to get back to normal and as we, uh, continue to fight Cobid and its forces, we do hope to have these in person. And up until the point when they can't be in person, we will be doing these virtually.
John Carlin: And you did ring one of my bells when you said media training, how to deal with the media.
Mary McGowan: Yes.
John Carlin: Maybe I can help you with that.
Mary McGowan: We, uh, would love that, John, of course, because, uh, we want to make sure that our volunteer leaders feel comfortable working with the media and, uh, have an opportunity, uh, to rehearse their talking points and again, empowering them so that they can empower others in their local communities.
John Carlin: Got you. So there's 22 of these centers. That is center the right word? We're going to call somebody who's one of the 22.
Mary McGowan: We're calling them founding members of the FSR, uh, Global Clinic Alliance.
John Carlin: Alliance. Alliance members. Alliance members. Got it. And there's 22 alliance members. But that's all around the world right now, as you and I are speaking on June 24, 2022.
Mary McGowan: Yeah. So right now, the 24 that have joined are from the United States. We are, uh, doing a webinar in July to invite all clinics globally, from around the world to the webinar about the alliance. And we're hoping, uh, at that point, that we will then have an opportunity to introduce this to International Sarcodosis, uh, Clinic Alliance potential members and have them join also as a founding member, I.
John Carlin: Know because I've talked to so many doctors in other parts of the world through the podcast that FSR has got a long reach. So I don't anticipate that. I think, uh, it's going to be very popular in other parts of the world.
Mary McGowan: We agree. And we're very excited to be working with our International Clinic, uh, future, uh, members.
John Carlin: Right. I got you. So now, we talked a little bit about the patient side, but this has a big upside for the doctors, the researchers, the clinicians, I guess, is the proper term. Uh, what is the clinician facing program that the alliance offers?
Mary McGowan: Well, there are several. I'll highlight a few. First of all, we believe, and we also confirmed again through the survey, that there's a real desire for these clinicians to have an opportunity for peer case review for, uh, cases that they have. Sorkidosis cases. So we're providing a platform for these peer case review sessions so, uh, that the clinicians can share the information and can get guidance, uh, and advice and input from other clinicians at other clinics, uh, worldwide. So that's one, the other one that we're really excited to be launching is a journal club, and we believe, uh, a, uh, Sarcoidosis specific journal club that's going to be supporting early career professionals and also encourages clinicians to stay up to date on Sarcodosis, um, medical literature, uh, is really going to be very effective. And again, an, uh, opportunity to bring these experts in these global clinics together to learn and talk about these journal articles. And then finally, we're also providing clinical, uh, engagement and education through, uh, our Clinic Engagement series. We just held our conference on June 15. We had, uh, I think, nine different countries that were represented over, uh, 100 registrants. And we had Dr. Menza from the NHLBI, who was, uh, the keynote speaker at this, um, really exciting conference. So we're going to be doing these quarterly, uh, and again, it's an opportunity to bring clinics together globally, to stay up to date on research and other topics around orchidosis care, education, research and support.
John Carlin: I guess the end goal for all this, because when I'm talking to patients on the podcast, what they're saying is, I go to my local doctor and they've never heard of Sarcoidosis. This would be the beginning of a way to fix that, right?
Mary McGowan: Correct. That's our belief as well. We do know, uh, that, again, uh, awareness is large, not only in the general population, so that if an individual does have psychedosis, uh, and has signs and symptoms of Sarchidosis, that they can bring that up to their doctor, hopefully for a shorter time period for an accurate diagnosis. But also to your point, John, from the clinician standpoint, again, there are, uh, so many rare diseases, and we want to make sure that Sarcodosis is front and center with clinicians, uh, and again, for the opportunity, uh, for a more timely, uh, accurate diagnosis, which, of course, can be lifesaving. And this is, um, critically important. And FSR beliefs strongly in making sure that we are working as hard as possible to bring this awareness to clinicians, uh, as well as to patients themselves.
John Carlin: Basically, what this is infrastructure that's going to have doctors talking to each other more, sharing their research, sharing their best practices, sharing their success and failure stories, so that more doctors and more places are conversing about Sarcoidosis and understanding best practices, best paths forward, making patients have better outcomes.
Mary McGowan: Absolutely. Beautifully said, John. Thank you.
John Carlin: Okay. All right, well, that's my job. I like distilling stuff. First, I want to ask you, I know that FSR has been doing, uh, some stuff with the National Institutes of Health, and there really is some momentum now to get some federal backing for some of the things that FSR is doing and for Sarcodosis related research from the government, which we never have had before.
Tricha Chivas: Yeah, thanks, John. We've been working really hard to grow relationships with the National Institutes of Health. And one of the ways that we've been doing that is to make sure that we are engaged in different institutes at the National Institutes of Health. So there's a lot of different institutes that have a particular focus. So Mary mentioned earlier that we had a session with Dr. George Menza, um, from the NHLBI, which is the National Heart and Lung and Blood Institute. And that is one of the, uh, areas, um, that has been a big focus for where Sarcodosis has been in the past. But we're also focusing in other areas, such as in the, um, environmental health studies area. So there's an institute that focuses on environmental impact, since we know there may be some environmental causes to Sarcodosis, um, and making sure we're part of that. We've been working with the organization that focuses on arthritis, um, and musculoskeletal disease and skin disease. Right. So we know there's different manifestations of psychosis, and we're having conversations now at all of these different spaces. In fact, this year in February, um, you may recall that FSR was able to participate in the NIH Rare Disease Day by having a panel, um, there. So really kind of activating and showing the NIH again, what we are doing and why the work that we're doing is so critically important in this space. And these are conversations that we're continuing. But in addition to the NH, we've also started working with the FDA on a number of different things in order to draw more attention from that federal level as well.
John Carlin: And are we making some progress with respect to this work?
Tricha Chivas: Yeah, so very excitingly. We just had a FDA patient listening session, uh, on pulmonary Sarcoidosis. This is a really, um, unique opportunity for FSR to get directly in front of the FDA and many, um, members of the FDA. We had 50 attendees at this session. It was a very well attended session, representing a lot of different institutes at the FDA. And for all of your listeners. I know everybody is a little, um, bit more familiar with the FDA now after cobid, but the FDA approves drugs, but they also, um, approve technologies that are being used for diagnosis. And they also, um, can help with the process, um, for repurposing drugs. So they have a number of different angles that we wanted to highlight that tie into the work and the needs of our patient population. And so what we did was we had this listening, um, session, which is a closed session, we weren't able to have that available to the public. That's the rules of the session itself. And then we had patients that came together, shared their stories. We had six patients, one caregiver. Mary shared a bit about things that we had learned from the community on this. And then, um, Dr. Lisa Meyer, who had provided the clinician perspective. And so that was our, uh, main goal was to get that information out. And these were really passionate stories that reflected what we heard from the community.
John Carlin: So what would actually happen in a listening session? The doctors are listening to the patient's talk and see how Sarcidosis affects their lives.
Tricha Chivas: Sure. Great question. So basically, it's an hour and a half long, um, meeting, and you have all of these different folks at the FDA who are making decisions about how drugs are approved or how technologies move forward. And we wanted to give them a chance. A lot of them are very scientific and don't necessarily have the chance to truly understand the patient experience. So, um, what this is, is a chance for them to understand how Sarcodosis is impacting individuals daily lives. What were the challenges that people faced with diagnosis, um, where did the technology, um, fail? And why do we need different technologies that might be able to do a better job, to do better at diagnosing? Understanding the drug, um, development process from the patient perspective would have been the barriers or challenges. So we raised issues there about diversity and, um, the challenges for diverse populations to be involved. We raise challenges for the drugs that are currently available, not adequately addressing the needs of, um, those living with Sarcodosis. So steroids is actually FDA approved in Sarcoidosis. And so that is oftentimes, um, a go to, as I know you've talked about many times on the podcast, a go to for clinicians as they're moving forward because it's cheaper there, um, are ways that it does work sometimes for some patients, but the cost was also something we reflected in those stories. So the stories were individual people sharing how all of those different things came to play.
John Carlin: Um, if nothing else, Sarcodosis is on the FDA's radar now, right?
Tricha Chivas: Yes.
John Carlin: There's so many orphan diseases and everybody's clamoring to be recognized, but it sounds like, thanks to the work of FSR, that's happening now. Our voice is a little bit louder, 100%.
Tricha Chivas: We are on the, um, radar, and we have some really exciting things that are going to be coming out as a result of that. And Mary, I don't know if you wanted to share some of the things that were coming out as a result of what we did with the listening session.
Mary McGowan: Absolutely. So after the listening session took place, we started creating, uh, a white paper that have a little bit more details on the session. And we're going to be launching the white paper in mid July. In addition to that, we're going to be hosting a community webinar in August, because we're so grateful to the community. I think. You know, John, our approach at FSR is always about engaging the community in our efforts. So, in preparation for the FDA patient listening session, we sent a survey to our clinicians, to all of our patients, and to our industry partners, because we wanted to get, uh, what they thought was the important messaging to send to the FDA. And that's how we came up with our messages. That's how we came up with the patients who had those stories that, uh, reflected those messages. And so we want to give back to the community and share the results of the survey and share the details of this really milestone event for FSR that took place. In addition to that, we are, um, also now working on the possibility of hosting a patient focused drug development session sometime later next year. And these sessions are much larger. They are open to the public, and they are important for advancing clinical trials and drug development. So we're really excited about that. And at the same time, we're also exploring conducting additional patient listening sessions and other manifestations, such as neurosychotosis or cardiac sarcoidosis to deepen the FDA's understanding, uh, and needs of those living with this complex disease.
John Carlin: Yeah, when you, uh, say neurosark, I'm so happy to hear that. I'm an orphan among orphans as the neurosark representative. So I'm, um, glad that that's getting spotlighted, uh, a little bit.
Mary McGowan: Uh, absolutely.
John Carlin: Yeah. All right, so now we got clinical trials, and it does seem like there's a lot more going on right now with clinical trials and trisha. Can you bring us up to speed on what's going on with that? I've talked to several different people, and I know there's a bunch of pharmaceutical companies out there, so can you kind of let us know where we are with that?
Tricha Chivas: Yeah, 100%. So this is a really exciting time as far as clinical trials goes in sarcodosis. In the past, we've had, um, one clinical trial running at a time, or many times even no clinical trials running in our space. But right now, um, there is a lot of interest and engagement in the clinical, um, trial space. And as you know, SSR has done a lot of background work to try to make sure that this is really possible for pharmaceutical companies to come into this space. So what's important and what we have done is we've made it so that they understand there is an eager population that's interested in clinical trials that wants more and new drugs, and helping to do that education on the back end for them. And then, in addition, we have really worked very closely with pharmaceutical partners, getting them access to, um, some of the key opinion leaders in the space, some of those expert clinicians that are out there so that they could have really good conversations and understand a little bit more about how their drug might work, whether it's a good fit for the clinical practices that they're trying to meet. And then in addition to that, we've worked really closely with the patient, so we know that patients are, um, interested, so we want to make sure we're getting that in front of them. And so we put in place a system that allows for people to know about clinical trials that are going on. So we do a lot of marketing and advertising, um, for that, for patients, so they can get involved if they're interested in being part of that process. And I'm really excited to share with you that we have seven sponsored clinical trials underway right now. And so, remember, I said there was about one or two happening, staggering over in the past. And now, um, we have seven potential clinical trials that are starting off. And just to clarify for your audience very quickly, when we're talking clinical trials here, we're talking pharmaceutical sponsored or biotech sponsored clinical trials, which are the ones which will end up resulting ultimately in a new drug. And so we have the academic studies which are building all the background for that, and they continue. And those are very important, but these are the ones that are getting much closer to getting that new therapy available for patients.
John Carlin: Seven.
Tricha Chivas: Seven.
John Carlin: That's amazing. Just in the time that we've been doing the Stark Fighter podcast, I think, like you said, one or two, and that was reason to celebrate. And now, a couple of years later, it's up to seven, potentially. And that could result in seven new drugs that patients could take. And the farther you can get those of us who are patients away from steroids, the happier we all will be.
Tricha Chivas: Exactly. Yeah. So it is a really exciting time. If anybody does want to know more, um, about clinical trials, please reach out to us, how they work. We're happy to give more background information, but this is the moment where we hopefully can get more and more engagement and more excitement around this. And this is why partly, we're talking to the FDA as well, because it's very important for us to continue those conversations.
John Carlin: So anything else happening that listeners should know about?
Tricha Chivas: Sure, yeah, there's a lot going on in research right now. Um, thank you to everyone who has supported all the research efforts that we have. FSR has been taking our research funding worldwide. You may know that we have funded over, um, $6 million worth of Sarco Dosis specific research efforts. And last year, we gave out about $200,000, uh, in research grants to academic researchers. This year, we're poised to give out over $300,000 in research funding to our academic researchers. And so this is really an exciting time. We just, right now, are in the final wrap up stages for our fellow that's going to be coming out this year. So we have received those applications and are finalizing the announcement, so keep an eye out for that. And very excitingly, we have grants that just came, um, out, uh, specifically for, um, pilot grants, which are early background kind of information studies that can help make it possible for researchers to get bigger funding to move the needle forward, and a new grant, which we have not had up until this point specifically available for cardiac sarcidosis, and we had an incredible amount of engagement around that.
John Carlin: Yeah, so let me ask you about that. How excited are the researchers, Mary, uh, for this opportunity?
Mary McGowan: Really very exciting, and I think it builds off the momentum that Trisha has been talking about, just about the interest in clinical trials and in research in the sarcodosis space. Again, we received the most applications ever for our pilot grants, and we received a very high number of cardiac sarcodosis grants, by the way, which was made, uh, available through a very generous donor to FSR, and wanted us to be providing funding, uh, specifically for cardiac sarcodosis. So we are so grateful to donors who allow this type of, uh, funding for additional support and research for, uh, sarcodosis. But I think all of this combined, John, is really building on this tremendous momentum for sarcodosis. Again, we see it at the FDA, we see it through the Clinic Alliance, we see it through research, we see it through the patient engagement, and it's just such an exciting time to really be moving the needle forward for sarcoidosis. We have our upcoming Patient Summit, uh, and thank you for your leadership, uh, as part of the Patient Advisory Group. And you all coming up with the title of Unveiling Possibilities Moving forward. And really, this is just what is happening at foundation for Sarcoidosis and for sarcodosis globally. And it's most exciting.
John Carlin: Yeah. Tricia, do you want to add anything to that?
Tricha Chivas: I don't have much to add, uh, except to say that we are also very, very excited. I know that the, um, conference itself is something we're very excited about. There's a lot of opportunities for us to engage around the conference. If you have not attended, um, an FSR conference, this is virtual, it is available. Last year, we had many individuals from all over the world participating in this. There's opportunities for networking, there are opportunities for engaging with global experts. So, um, whether you're brand new or you've, uh, had sarcodosis for a little bit of awhile, we'll have different tracks that can help you learn a little bit more about what's happening in the disease or what you need to know. And then we also have these great tracks that came out of the wonderful theme that you came up with that's really focused specifically on things, um, like understanding your, um, finances, how to talk to your clinician, how to engage and learn, um, from others when you're trying to navigate the symptoms of your disease kind of life hacks, as it were, in order to think about things. So we're really excited about, um, that coming up and what that conference is going to be when we invite all of you to join us.
John Carlin: Yes, the summits are wonderful, and I hope we get back to a point where they're in person again. Hopefully, we, uh, can get the pandemic behind us, and that's just my thought, just thinking, um, out loud, the networking opportunities, I think, are as good as they are virtually. I'm hoping that eventually we um, can all kind of meet in person. Because every time I've been for work to an event, you learned, uh, as much having a beer after the day, sitting around with your fellow conference as you do in the conferences themselves.
Mary McGowan: Right?
Tricha Chivas: And I think that's one of the things that will be another benefit coming from the Clinic Alliance is that um, opportunity for um, more local level engagement, uh, with others. And that is definitely something we want to be focusing in on as we move things forward there.
John Carlin: Got you. So let me shift gears a little bit, Mary. Last year, early this year, there was some really exciting programming, uh, focused on increasing diversity. I was involved in some of that and inclusion with respect to uh, sarca dosis. How will FSR be continuing that work?
Mary McGowan: Uh, John, this is such an important area for FSR. We believe so strongly in diversity and inclusion in everything that we do at FSR. But we were so thrilled, uh, with the very successful results, uh, of the Ignore No More Campaign. This campaign was focused on African American women and sarcoidosis. It was just an incredible reach with over 500,000 media impressions. We were so thrilled to have Gerald Prescott Galen, who's an actress of AMC's Walking, uh, Dead, and Bets All the Queen's Men. She's been living with sarcodosis for many years, but most recently was diagnosed with cardiac sarcodosis. She's been an amazing PSA for us that got over 1000 views in just one month and really helping to amplify our uh, messaging about this really critically important, uh, work. As you know, African American women have the highest prevalence of sarcodosis and by far the worst outcomes. And so it's important that the African American, uh, community understand this and also that clinicians understand this. And so that's what this was really uh, all about. This campaign. We're um, really excited as part two, we've just gotten uh, funding for uh, a part two campaign that's, uh, going to be called Ignore No More Act. Now act stands for Advanced Clinical Trials, Equity in Sarcodosis. And this is really going to be taking a deeper dive into how we um, can support and encourage clinical trial participation, uh, among all African Americans. Um, and our goal is to really learn from the community and to create strategies that can be captured in white paper, uh, and will be helpful tool for, again, both academic as well as, uh, industry sponsored trials. And we're really excited to be, as part of this campaign, hosting a congressional briefing to drive change at the federal level. So I hope listeners stay tuned for this really exciting expansion of this national campaign, and thank you for asking that question. We also have a Chance Zuckerberg initiative going on. I'll turn it over to tricia. She's been working very closely with the Chan Zuckerberg group, uh, on this exciting diversity campaign as, um, well, yeah, so.
Tricha Chivas: The Chanceuckaberg Initiative, I think it's really important to say, for the community. So everyone knows this has been not just a grant and then the work that comes, uh, out of that, but this has really afforded FSR a lot of other opportunities for advancing and growing the skill sets of the staff, for reaching out and understanding from others that are in the network, um, best practices that they're using that we can, uh, then bring back to our community. So this has really afforded us a lot of opportunities in order to expand and grow and move things forward for those living with Sarcoidosis, which is our ultimate goal. The actual grant itself will be looking to work with clinics. So, um, members of the alliance, or, um, others that will be working with those clinics and helping to improve the diagnostic, um, and what we'll call the referral pathway. And what I mean by that is the ways that you get from your local doctor, your, um, local pulmonologist, or your local generalist to those more expert, uh, care. And what is that pathway? Um, and how do we really define that so that we can, again, reduce the amount of time for diagnosis and improve the pathway for treatment, especially if someone's living more rurally and they don't have that kind of connection to a more urban center that might be more, um, advanced in this space?
John Carlin: I've never heard of that term before, the referral pathway. And you, um, guys are so good at sort of finding terms because you see this stuff all the time. The individual patient that lives in the middle of north or South Dakota or some rural area, in fact, not too far from where I live here in Virginia. That's what they talk about. They say my doctor had never heard of sarcle dosis before. Um, I'm not in a real large urban area, but we do have a large clinic here. People drive 4 hours to get to where I am in Roanoke, Virginia, for care, because we're the big medical center in this part of the world, right, serving the western half of the state of Virginia. But even here, there are very few Sarca doses patients. I might have been one of six for my Rheumatologist doctor, which is not the same as, um, going to Cleveland Clinic, which is what I ultimately decided to do, where I'm dealing with a center where that's all the doctor sees. So that's not so. That term is a referral pathway, and you're trying to sort of take that from being a rural road to an interstate to get you to that doctor quicker.
Tricha Chivas: That's all right. I think for us, what we're trying to do is help to identify those areas where patients are being seen and create a kind of a conversation both ways from, um, the major centers to some of those more local level individuals that are, um, supporting individuals living with Sarcodosis, and then, um, also allowing an opportunity for them to have that conversation back. And because a lot of times, even as you're going to Cleveland Clinic, John, you still have the local doctor that you're going to want to talk to, and giving that kind of conversation, allowing them to get the kind of education they need. And then when a case is more complex or they need more support, they can have that support that way. And that's what we're trying to build.
John Carlin: Awesome. So, so many exciting things. Mary, what else can listeners look forward to as we move forward over the next few months?
Mary McGowan: Well, we have so many exciting things that we've been talking about going on at FSR. Tricia and I are continuing to speak internationally at different conferences. As a matter of fact, in just two weeks, we're headed to Boston. We're both going to be speaking at the World, uh, Orphan Drug Congress, which is really exciting. It's a very large conference, and it's wonderful to have Sarcoidosis being represented, uh, there at that conference. So we're really looking forward to that. Uh, I think also the viewers, if they want to stay in touch with us in terms of the Clinic Alliance and its growth, if, uh, anybody is being treated at the center or alliance that is not on our web page and would like to share contact information, please, uh, let us know, because we want to ensure that we are reaching out, uh, to everybody to offer this opportunity to bring them into this really extraordinary, uh, unique effort. And also, please sign up for our patient conference, um, July 30 and 31st. It's going to be so exciting this year. Last year, we had over 300 attendees from around the world, so we're really looking forward to a really exciting conference this year as well. So those are just a couple of other events. We have some other events on our web page that are coming up. Uh, we have a couple of, uh, painting sessions, so I would encourage anybody who's listening to please join FSR if you have not, all you, uh, simply do is fill out a quick form with your email and that helps you stay up to date on all of our different events and activities.
John Carlin: Okay, so I've got a note here to ask you about life, uh, hacks and living with Sarquoidosis. So how will patients be able to take advantage of those or find out what those are?
Tricha Chivas: Sure, I'll jump in if that's okay. Mary.
Mary McGowan: Great.
Tricha Chivas: The life hacks things that we're trying to do here is learn from folks like you, John. Like, what do you do when the fatigue is overwhelming? Or what do you do when you're just having a really painful day? Or what are those things that you're doing? Life hacks are the tips and tricks that people have used in their own daily lives to navigate the disease and learning from individuals that are living with the disease to, um, do that. So this is going to be one of the exciting kinds of sessions that we're having this year are, um, beyond all of our wonderful chat boards and we have a coffee break that's open and chatting. This session is a chance for people to talk back and forth with one another, um, and share how, um, they are managing their day to day.
John Carlin: Got it. Life hacks. I love it. And so can people now sign up? Is there not a discount if you sign, uh, up early? How's that work? Early bird? Is that how that works? And how long is that available?
Mary McGowan: Early bird registration right through the end of the month. So it's a great opportunity. And there's also, John's, scholarships that are available. So for people who want to attend the conference, uh, there is a registration fee, but we want to make sure that there are no barriers to anybody joining this conference. So if anybody needs financial assistance, there's information there as part of the registration as well. Uh, and so, please, we, uh, want to be able to ensure that everybody has access to attending this really important educational, global event as part of that. But, yes, please pay attention to, uh, the early bird registration, uh, as well.
John Carlin: Got you. And if somebody can't afford it, but they want to be there, we'll find a way to make it happen.
Mary McGowan: That's absolutely correct. We want to make sure that everybody has access again, uh, to support education, opportunity to ask questions, all the networking that takes place. We understand that this is critically important to bring people together, living with Sarcoid doses to support one another. And that's what this patient conference is all about.
John Carlin: Uh, well, guys, look, we've covered a lot in a short amount of time. I'm just thrilled to have had both of you on. But more than that, thrilled to hear about all the momentum, uh, on all the different fronts. So congratulations on just really getting Sarcudos out there and advancing the cause you really deserve. Kudos.
Mary McGowan: Well, thank you, John, and thank you for all that you're doing. These podcasts just really help, uh, to, again, amplify the messaging, the incredible interviews that you've done, the highlights of the campaigns that you continue to do. We are so grateful to you for doing this incredibly important work and sharing, uh, this information worldwide. And so you're, uh, part of the great success, uh, that we are all having, as well as all of the patients, the entire Sarcodosis community. It's everybody working, uh, together to spread the word, to spread the awareness, to engage in initiatives. And this is really the result of everybody's success in working together, um, building this momentum. And we're looking forward to the near future to continue to see great successes on the continuation of this momentum building so rapidly now.
John Carlin: All right, well, thank you all very much.
Tricha Chivas: Thank you so much.
Mary McGowan: James on.
Tricha Chivas: We appreciate it.
