Just in time for Liver Cancer Awareness Month, we interview Donna R. Cryer, JD Founder, President, and Chief Executive Officer of Global Liver Institute. GLI is the only patient-driven liver health nonprofit operating across the US, EU, and the UK. GLI convenes the NASH, Liver Cancer and Pediatric and Rare Liver Disease Councils, as well as the Liver Action Network, collectively more than 200 organizations. In the episode we chat with Mrs. Cryer about how she has channeled her personal experience as a patient with inflammatory bowel disease and a liver transplant recipient into professional advocacy across a career in law, policy, consulting, public relations, clinical trial recruitment, and nonprofit management. At GLI, Mrs. Cryer has raised more than $10 million for liver health initiatives. Among her many accomplishments with GLI, she developed a program featured by the White House on Solving Organ Shortage/Transplantation. She has launched numerous other successful programs at GLI, including the Cure Campaign, Advanced Advocacy Academy (A3), Liver Matters Blog, Liver Matters Health Policy Memo, the NASH Council, the Liver Cancers Council, and the Pediatric and Rare Liver Diseases Council.
Bryetta Callowa...: Hi everyone. Welcome back to another episode of I've Been Thinking with your host and digital best friend, Bryetta. I am so excited for this episode, here's why. I really make a commitment to you all to bring people that I think are interesting, that are doing really important, amazing things. You know I always like to learn and I always like to bring someone to you who I feel like can teach us new and amazing things. And with that being said, I am thrilled to have Donna Cryer, JD on the episode today. She's the Founder, President and CEO of Global Liver Institute. Now, Global Liver Institute is the only patient driven liver health nonprofit operating across the US, the EU, and the UK. It convenes the NASH liver cancer and pediatric and rare liver disease councils, as well as the Liver Action Network. So collectively more than 200 organizations.
Now she's going to tell us a little bit about her personal experience being a liver transplant recipient, but I do want to highlight the fact that at GLI, Donna has raised more than 10 million dollars for liver health initiatives and among some of those accomplishments, which I'm certain are many, she developed a program featured by the White House on solving organ shortage in transplantation. She's launched numerous successful programs at GLI, including the Cure Campaign, Advanced Advocacy Academy, a Three Lives Matter blog. I mean so many amazing things. She's a featured speaker and all around she's giving me the good vibes of someone who's going to be engaging in this conversation. So Donna, I know I said a lot, I might have missed some things, but hello, how are you, and welcome to the podcast.
Donna Cryer: Hello. Thank you so much. And my mom will be sending you a check.
Bryetta Callowa...: I love it. I love it. I love it. So I think the very first question that obviously comes to mind is that I know based upon just a few of our conversations that you have your own personal experience with being an organ transplant recipient. But I would love for the audience to hear a little bit about your story, how it happened and sort of where this passion came from.
Donna Cryer: Absolutely. So I have a lot of conditions that, supposedly if you look at the data, Black people don't even get. And so I have inflammatory bowel disease, Crohn's disease that was diagnosed when I was 13 years old and that developed into a type of autoimmune liver disease, a rare disease, and necessitated me getting a liver transplant while I was in my twenties. And so I will soon to be celebrating the 28th anniversary of my liver transplant, which I'm so blessed to be here.
And I had to build my own organization to meet another person of color who had my type of liver disease. Because if you look at the medical textbooks, so many people go undiagnosed with inflammatory bowel disease and they're told that "you can't possibly have it," or "you just have a stomach ache or something." And then so few people are diagnosed with the rare type of autoimmune liver disease that I have. So to make it to be able to be listed for transplant and to be able to perceive a transplant, then to be so successful and to survive almost 30 years now with the transplant are all just a series of miracles.
Bryetta Callowa...: Well one of the things that you mentioned, and I think it's so important, is that it seems as though in every space that people of color occupy, there's some sort of disparity, right? There's some sort of lack of equity that impacts us and this is... it's absolutely true in the health space as it is in some of the other spaces. What are some of those racial disparities that you've uncovered or that you've seen when it comes to being a recipient of an organ?
Donna Cryer: First of all, there is a disparity in treatment for all people with liver disease compared to other diseases. It's not top of mind for primary care physicians, endocrinologists, cardiologists and the other doctors that a person might encounter and that's part of what the Global Liver Institute is built to change. And then within those, there are different disparities for different groups across the more than a hundred different types of liver diseases. So disparities and diagnosis and connection to specialists for rare and autoimmune liver diseases is one thing. A huge disparities in diagnosis in people with fatty liver disease and NASH, which is increasingly the number one need for transplants is something that is so large within the African American and the Hispanic community in particular, which has a certain risk factor. Disparities in liver cancer are immense, particularly for African American men.
So we have to, as an organization, really drill down and we've been having a series of working group discussions with experts from those various communities so that an organization we can respond really specifically in linguistically tailored, culturally tailored sort of credibility tailored way, what are the different sort of broken trust issues with the different types of communities so that we can build back from there and really meet people's needs. So when I think about how to ensure that more African Americans know about the opportunity for transplantation, it's several things, it's making sure that they are identified by their primary care physician or specialist as needing a transplant. It is being listed for transplant. A patient shared with me their checklist of all the things they needed to do to be listed to transplant. And when you think of the access to care issues, to get an appointment, to get time off work, to be able to do one thing, one visit, one doctor, and here you're handed a list of 18 things to do before you can be listed to save your life and you're like, "Wow, that's daunting."
And so many people fall off before they can be listed for transplant. And it's things like get vaccinated, get dental work, and have all these checks by all these other physicians before you can be listed so that you can be both sick enough and well enough to be transplanted, there's the rub. And then can bring your own donor with you, by the way? Living donation is the highest survival rate. It wasn't even available when I was being transplanted, but too many people of color are missing out on the opportunities for living donation because they don't know that's an option and they maybe don't have the network or afraid to ask to have a living donor.
And then it's actually surviving long enough on that transplant list to get the transplant to be in a region of the country that has a really high performing organ procurement organization that is reaching out to the community and getting a donor organ that matches you, ideally genetically or by blood type depending on the type of organ. And so there are all these factors and they all have their own sets of distinct disparities and inequities for people.
Bryetta Callowa...: So much of what you said resonates with me. My background, I worked in healthcare marketing for a period of time and so it's something that I'm particularly aware of when we talk about disparities when it comes to access to health. And the number one thing that I heard when you said this was primary care physicians. And so when you think about preventative healthcare and the lack of access that many people have, I remember a physician said to me once, I asked her, I was like, "What's the number one thing people can do to be their healthiest?" And she said, "Truly, it's about establishing air. Don't use the doctor just for emergencies. You want to build a rapport and a relationship with that person." And so to your point, I can see that in and of itself would be a huge barrier.
And then the list of things that you just went through, it must be not just financially exhausting but emotionally exhausting to be able to navigate all of that. I'm curious for your personal experience or maybe what you see through the institute, how do people build a network to support them through a process like that?
Donna Cryer: I think it is both the medical network and then the caregiving network. One of the things we really try to highlight as we build out caregiving and community supports is that someone may not... There's a lot of assumptions from the healthcare system that you have a spouse or a parent or somebody who is willing to take you all these visits and is available, and that's not always the case. I've been part of a friends' network for someone who was very sick and I'm like, "Okay," there were like eight of us, "You're going to visit a hospital, you're going to prepare a house, you're going to cook the meat, you're going to do this." And so friends networks, church networks, sorority, fraternity networks, pitching in to help people, neighbors, those are very important and the health system doesn't always accommodate or acknowledge them as real for a person.
Particularly someone might be declared ineligible for transplant because they don't have a solid network, but they do have all of these people in their lives, even though it's not sort of a spouse or a parent or someone who are willing to fill in the gaps. And so I think that it's so hard to... particularly for those of us who are used to caring for other people and shoulder the burdens of the family and fixing everything and doing everything for everybody else to say that we need help, that we need care. I'll have to admit that when I, going through my transplant, I was young, my parents, my father stayed home and looked after my little brother, my mother was with me in Baltimore at the hospital every day. So I was blessed in that regard. As an adult, my husband does fantastic, but I have to admit that the first thing that I thought when I needed to get my knees replaced, which I did because I'd been on prednisone for so long after the transplant, was, "Oh my gosh, who's going to feed me?"
Because he doesn't cook. I do all the cooking. I do all the cooking. And so I was like, "Ooh, Dr. Cryer is not going to be able to eat. I'm going to starve to death before I can walk again." So what's going through my mind? As I was sitting with the doctor when I first got that diagnosis when the orthopedic surgeon was like, "You're going to need knee replacements." I'm like, "Okay, who's going to feed me?" So I think that... But we worked it out. So I think that those relationships and being okay asking for help is really important for those of us who don't ask for help. On the physician side, I think it is recognizing that... I serve on the Council of Medical Specialty Societies now and I'm on the board of a hospital where I was originally transplanted. So I think about these issues from the physician side a lot in the systems where they are and at this point in the pandemic where they are beyond burnt out and the pressures on them for time limited, very short visits even for very complex patients are real.
And so I always ask my doctor, "How are you doing? How are you doing? Assess them. I looked at the office, I'm like, "Is it a busy day? Are they already backed up?" And know how to approach things based on, okay, how are they doing? And they appreciate that, they're people too. And so part of being an effective patient as I teach in our advocacy academy and in my own experience is taking good care of my doctors and of assessing where they are before I just leap into my issues, being organized in my questions and in my presentation of "I've seen these three doctors since my last visit. This is what they said," serving as that bridge.
Sometimes it's hard work, but it really helps them to help you in the most efficient way possible. And then you're like, "Oh yeah, that's that patient." When they sort of page through and look at their day, they're like, "Oh yeah, I want to see Donna. I love seeing Donna. Donna's always ready even as complex and whatever she is medically, I'm like, I like talking to Donna. That's going to be a good highlight of my day." And I think that remembering that your doctors are people too, is a really important part of developing that long term relationship as a patient.
Bryetta Callowa...: Well, something that you said particularly resonates with me as I navigate family members who are dealing with not necessarily health issues, but as they get older, one of the things that you said that actually sparked in my head, it is that idea of advocating for yourself, but there is certain investment of your own energy, mental energy to keep organized, to keep track of the appointments, to keep track of the symptoms, to keep track. And I think I would assume for a lot of people it feels overwhelming to do that. And I'm curious, is there something that you're offering maybe the people who you serve through the GLI to help them take more control over their healthcare process?
Donna Cryer: I think there's sort of the analog or sort of beginner's version and then there's sort of the more advanced patient version. And so you just start with a notebook. I have a notebook, I take notes in my doctor's visits and at the end I was like, "Okay, the next steps, what do they want me to do next? What do we say and what do they want me to do?" And I still refer to that. So I have years of those notes in the little notebooks. Nowadays though, I have a lot of digital equipment. So the scale that I step on every day is a digital scale and is pretty trend lines. I have an aura ring and a Apple watch so I can set everything from my heart rate variability to my oxygen saturation to how well did I sleep. Most people don't need that, but I think how I use it is to help understand, I'm like, did that medication, was that helpful or not? I was like, ooh, no, it really messed up my sleep and here's the data to show what I mean by that.
Or it just helps me think about going between a month or three months or six months between visits. It's really hard to remember and they ask, "How are you doing?" I'm like, well you can answer, "I'm doing great today." But then you sort of forget all that week when you were laid out, those days when you were up and down or how... And so I think that there are several really great apps that can help track... think about what are the most important things to you, think about the questions that your doctor typically asks and you can pick an app that helps you record those things. And having your lab results and looking at them often, particularly for liver patients or people who don't know that they're liver patients, but should, your liver enzymes, your liver function tests and things are in the lab work that you're already getting in a normal visit, but they may not be taking attention to it.
And so being able to look at your labs are available on your hospital patient portal, or you can ask for a copy of them to be sent to you, look at them and know what's normal for you and be like, "Oh, that's off. I should ask a question about that." I think that's the really important thing about understanding your lab work and being able to ask questions because many times I've been in this situation where the lab work was really alarming and I was, like in Ferris Bueller, I'm like, "Anyone? Anyone? Bueller? Bueller? Anybody want to address the [inaudible 00:17:49]."
Bryetta Callowa...: But I love so much of what you're saying because I do think that this is something that more people should understand, which is that your physician actually wants you to be actively engaged in the process, that asking those questions and looking at those labs, even if you don't know what they mean, but to say "What does this mean?" Or "I noticed that this looks different than the last time, what is that?" I think so many people are afraid. I find myself saying this to people in my life all the time. I'm like, "No, you're allowed to ask questions. You're allowed to say I don't understand what does that mean?" That is a signal to your physician that, "Oh, this person is engaged in their care, they're sharing the responsibility of this process." And I think more people need to realize that it's not only okay, it's encouraged for them to be that active.
Donna Cryer: Absolutely. And if it's not encouraged, find a new doctor.
Bryetta Callowa...: Yeah, that's a great point.
Donna Cryer: Find a new doctor or find a new practice. I go to a GI practice that has nurse practitioners and I'm about to go to a nurse practitioner conference and they have more time. So the fact that every four weeks I can talk to them and they can have eyes on me and assess like, "Ooh, you may need a little help up here. Do you need fluids? Do you need a new prescription, how is that going?" And I can have a longer conversation with them because... so the confines and the way the system is constructed allows for them to have that more time. And so I specifically pick that type of practice because I know I need that type of time and conversation from that type of provider.
So recognizing the type of patient you are, the type of information you need. It's okay if you're the type of person like, "Just tell me if I'm good. Yeah, I'm good? I'm going to go with that." That is a fine patient type to be. If you're the person who's like, "I want to know all the details and have the conversations," and things like that, "and I'm going to look up some articles that I'm going to bring in the article and we're going to discuss the article," if you're the type of person, let them know. Pick the practice that matches you, that's fine too.
Bryetta Callowa...: Yeah, I love that. I want to ask you there's a very specific type of person that goes through something and they're like, "Okay, I went through that and I'm good." And then there's another specific type of person who's like, "I went through this and now I have to do something about that. I have to do something with that experience. I have to do something with that knowledge." And I'm curious for you, what was it about maybe your experience or what you went through that you said, "I have to build the thing that wasn't there for me." What was it that you were trying to solve for?
Donna Cryer: So I realized that there was never going to be an end of the problems to solve in healthcare. I was never going to be out of work, never going to go out of business solving problems in healthcare and I wanted to get experience beyond my own transplant experience. And so I had jobs in cancer, in a variety of different cardiovascular disease, was it a PR firm, a clinical trial recruitment firm, built a consulting practice. And so by the time my 20th anniversary for my transplant came along, I really thought hard about what other patients coming behind me have the access to the same type of innovation and care that saved my life and sustain me today. And the answer realistically was no. And particularly for patients of color.
And so I recognize that in retrospect, all my experience has really helped the Global Liver Institute stand out because in some ways we do serve as a consulting firm, a PR firm, a clinical trial organization, a legal policy federal affairs team, all of those different jobs and experiences that I had leading up to this, I'm all able to apply for the benefit of liver patients and families today.
Bryetta Callowa...: One of the things that I think more people realize as they follow the natural trajectory of their career is sort of understand that all of the skills that you gain along the way can be used for some of the things that you're passionate about. Some of the problems that you see, it's not about sort of deviations, it's more about like, "Oh look at this great skill that I picked up here that I can now apply here." But one of the questions I have for you, since I know so many of the folks who listen to the podcast are in themselves innovators, folks who want to launch something, create something, build something, I'm curious what your experience was just building something like GLI from the ground up. What was that process like for you?
Donna Cryer: It was interesting because it came after I already had built a very successful consulting business. And so I actually sort shifted over someone who had come to me for an internship. I was like, "Great, would you be interested in having your internship be to build a new nonprofit organization?" And so she said, "Sure." And so my consulting firm had been advising a lot of nonprofit patient advocacy organizations. So I had the advantage of having seen the best and worst, what to do, what not to do. And so hopefully we've borrowed from all the best practices, but I think that building any business is a risk and building any business is a learning process and there's certainly things that I didn't get right the first time until we eventually hit our stride. And so there are a couple of things...
I was talking the other night to the head of the small business administration and I was saying to him one of the things that for people with chronic illnesses for disabilities who have this entrepreneurship that they want to unleash, but before the ACA, they were sort of tethered to their employer because they couldn't get health insurance. And for all of our patients or certainly for somebody like me I otherwise would've needed to be in a big company because that's the only place where they could afford to absorb my high health costs and the cost of my health insurance. And so I was lucky enough to have it through my husband and his company. There were others who had gotten it through the ACA. And so I think that all of these supports to allow entrepreneurship to be unleashed, to allow the sort of absorption safety nest... safety net, plural, to support entrepreneurship are important.
And so there are a lot of SBA programs, there are a lot of programs to support women owned businesses, minority owned businesses, small businesses, veteran owned businesses and I think people should not be ashamed to take advantage of all of that help because at the end of the day, you're going to have to prove yourself to your customers or to your constituents or to your donors. And so when I think about building the Global Liver Institute, it really was the advantage that I had from all the different parts of my career. But even more than that, having had the lived experiences to know exactly where the pain points were, where the value could be added and the understanding of the landscape of who wasn't meeting those needs. I think everybody who builds a business or a nonprofit really needs to think about have you defined the need and are you meeting it? Are you meeting it in a new and innovative way?
And so we have. And that's why we continue to grow. That's why the pandemic accelerated our growth because people were looking around and being like, "Oh my gosh, we need an organization to..." and we were here. And so I think that what I enjoy now is a very supportive, engaged board of directors that know that they're there to help and they do. And I benefit from having a senior leadership team now that I did not have at the beginning. So I have some partnerships to share the burden. I really applaud, and sort of envied at some time, those startups that had startup teams, founder teams. It was really just me in starting up. And so find that team. And then I also had the advantage of being a lawyer who understood finance. And so all those different parts that you really need as an entrepreneur, get a good lawyer, get a good accountant, get a good,... I was sort of lucky that I was good at all those things already. And so for those who are not, get those people on board really early so that you're building right from the start.
But I'm so proud of the organization I've built and I realize that there's certainly the patients that we train and that we serve, that's a value, but the organization itself, the ability to hire and fire, to promote, to nurture, to mentor, to spotlight, to support, to build the table and set the agenda for what's going to be discussed at the table even if we were just judged by the organization itself and the diversity of our board, the diversity of our senior staff, the diversity of our junior staff, how we reach out for our interns around the world and make sure that we have interns of color and that they're paid so that people who don't have wealthy parents can participate in an internship. And all of those decisions flow out of the fact that this is the organization that I've built. And so that's really exciting. And then we get to how we impact patients and other people.
Bryetta Callowa...: Well something that you said that I think is so interesting as I mean, the reason why I started this podcast was because I'm so interested and passionate about amplifying the voices of particularly women of color, especially those who are endeavoring to build something, create something, launch something. And I'm also trying to give as many perspectives as possible because we know that there is no one experience to being a person of color. There's no one experience to being a woman of color. So with that in the backdrop, I'm curious for you, did you find being a woman of color to help or hurt your start with the Global Liver Institute, did you find that it was more difficult because you were a woman of color? Was it an advantage? Did maybe it not play a role at all and you were just trying to build or did you even think about those things?
Donna Cryer: I absolutely think about those things. I'm sure it both hurt and helped. I'm sure there were people who didn't and still don't understand how leadership can come in this form. I think it confuses people, "How is she running this whole thing? We don't even understand, what'd she just do, how she's in charge of all this?" But I use that to my advantage. I think the fact that people underestimate me is... I think the days are waning.
Bryetta Callowa...: Yeah. Yeah.
Donna Cryer: And when people do, they've heard about me now and so I can't use that anymore. But I think it has. And I think there are also people who would've donated money easier if it was led by somebody who wasn't of color. Or I think there would be networks that would be open to me that aren't. But I also know I come from an extremely privileged place as it is. And so I was leading one round table meeting for African American experts in liver cancer and the chief of gastroenterology at Harlem Hospital and it's something she was talking about her fabulous initiatives and programs and she's like, "That's how we do it in Harlem." I'm like, that's my new tagline that's just... I'm like... I'm from Connecticut so I wasn't born with a lot of swagger, but I'm going to adopt yours and I'm just going to go around with a T-shirt now that just says "That's how we do it in Harlem."
Bryetta Callowa...: I love it.
Donna Cryer: I'm going to just answer every question with that. That's how we do it in Harlem.
Bryetta Callowa...: I love that. I love that. Well, and I think to your point, there is this sort of, and something that you said that I really love, which is, and this has been my experience as well, which is that there is a part of me that loves being underestimated or sort of seen as a neutral, maybe not an advantage, not a disadvantage, but sort of a neutral because it just strips you of any sort of expectations, you can just create as authentically as you want without being informed. And you alluded to the fact that when you started, it really was just you starting this and I think that there's something lovely sometimes about not having a lot of input in that genesis state when you're launching. But to your point, you've now grown, you're clearly a global organization. And so I'm curious about what are you hoping for or expecting the future of the Global Liver Institute to be now that you're not a best kept secret and you're having this influence, what does the future look like for the institute?
Donna Cryer: Well, I think it's increasingly global and it's exciting that we're invited to Australia and India and Malaysia is modeling their liver cancer programs based on our model. And so that's exciting. And so growing deeper grassroots in the US and around the world is important. We are training community research and clinical trial ambassadors who can do support, who can do digital advocacy. You can't get your vaccine at CVS if you can't get onto the app or the portal and who can be a bridge between researchers and clinical trials. And so I think it is both growing deeper roots and spreading our branches as well is really exciting. Building the team, so as much as I appreciate when people want me, it's more exciting when people just want GLI. And there are others that I've built up within the organization or who have chosen to spend their careers with me and they go out. When we started the month of September and I looked around and I was like, "Okay, quick check, where in the world is everybody?"
And they were in Prague and they were on virtual conferences in Egypt and they were in Italy and they were in Switzerland and they were in Colorado and were... And so that is exciting to me that there's this leadership team that is present and is representing. And when I hear that the patients that we've trained are equally spread out throughout the ecosystem, that they are at FDA meetings and they are leading research and they are reviewing DOD grants, that's what success will really mean. When I was at one event talking about liver health and one of our former employees was texting me that she was at another high profile dinner and someone from the White House was also talking about liver disease. And so that's success, when we're part of that conversation, where we're positioned in line with the prevalence of impact. One in three people have some form of liver disease and everybody has a liver and should become concerned about their liver health. And so when we are everywhere and everyone is talking about us, then I will be happy.
Bryetta Callowa...: Yeah, no small goals here. No small goals here. But something you just said is, it's so important that I hope people don't bypass it and I want to hone in on it because something that you said to me is a really great signal already of what your leadership style must be like. The fact that you called out a sense of responsibility for the people who've entrusted their careers with you, a sense of responsibility around the fact that I don't have to be the superstar here. That's not what success really means. And I think it's that understanding, again, thinking about people who listen to the podcast who are looking to build or create or something. That is such a necessary component for people to understand, which is that there is a point where the thing you built outgrows you and you have to be sensitive to that so that you can be equipping, building folks so that it can be exactly what you said, a global organization because...
And I think the reason why this particularly hits with me is that I do a fair amount of talking with organizations and companies around the world. And I literally had this conversation earlier this week. I said, "I think the number one thing that I often find is that there's a disconnect between the words and the actions." I hear them saying, "I want to go global, I want to do big things," but their actions are showing, "I can't let go. Nobody else can do this but me. I don't trust anyone else to do it." And I always find myself having these conversations where I'm like, "Those two things can't coexist. There has to be a moment where you let that go." Where does that ability for you... Well, I guess the question is do you recognize that about your own leadership style and how did that come to you? Because I want more people to learn how to do that.
Donna Cryer: I think it's two things. So one part of it is the confidence. My light cannot be dimmed. So you shining bright does not dim my light. And so that's part of it. I was like, "You can do that." I'm like, "I'm still going to be all of this and some of that." I'm growing, I'm learning, I'm getting better and evolving and I'm really happy with me deep down, for real, for true. I know who I am, I know whose I am. So you can't mess with that. And so I think that's why I love nurturing other people. Cause it's just exciting to me. It just gives life. And so the other part is honestly an artifact of my patient journey because I have been bedridden. I have spent weeks, sometimes months, being like, "I wish I could lift my head. I'm so tired. I'm going to have to think about turning over." I'm like, "Do I really have to go to the bathroom? That seems like too much to ask to go all the way down that hall. I'll just stay here."
And so I've had to be more thoughtful I think, than a normal CEO about building an infrastructure around me that's sort of hypothetical about "What if you were hit by a bus? What's the succession plan?" I'm like, "Well, I've been hit by that bus several times." And so I have to color code my files, I have to build a redundancies, we have to cross train, I have to continue to test you, train you and put you up even before you think you're ready to make sure that you can do this in case I can't, because there may be a time that I can't. And I'm more sensitive to that than the normal person who's never had a health issue, who's never been taken out of their lives in a serious way. And yet my ambition isn't any less than anybody.
So I always just had to strategize ways to make sure I can still meet those goals but protect the vision and the dream and the organization for me on both its greatest strength and potentially its greatest weakness. And so I have to protect and build around that. So I think there's a big part of that. It makes it really imperative to me to build in not just a CEO succession plan, but can everybody know what everybody's doing and back everybody up because this is something that happens and putting people in front of people and giving them opportunities and coaching them to grow into them. It's just vitally important to me in a way that perhaps it's not as vivid for anybody else.
Bryetta Callowa...: No, I think... Yes, I love so much of what you're saying. And I also love the practical application of that. It is this idea of it's not theoretical for you, it's a real practicality that you create sort of a shared ownership of the vision, of the organization. Because to your point, there's your lived experience, which is now translating into your leadership style, and I think that's so amazing. I am curious about sort of... When I was looking at your bio in preparation for this conversation, I saw so many things that you've accomplished, the campaigns, all of those things. I'm curious about, is there any one of them in particular that is particularly special to you? A specific accolade or a specific campaign that you've done or that you are doing that you're like, "This feels more special," than maybe the others?
Donna Cryer: I did enjoy receiving the award from the Black Doctors because I'm not a doctor. Receiving an award as one of the top Blacks in healthcare from the [inaudible 00:41:18] Institute and the School of Public Health from blackdoctors.org. I smile because people have so low expectations of patients and resetting how people think about patients in the same way that our parents, we thought people... What people think about Black people and about Black women, and I rethink what people think that patients can do and can be.
And so the fact that I can receive awards from Black doctor physician organization is... it was special and was sort of a milestone in this trajectory where I am the public member on the Council of Medical Specialty Society as the only patient amongst leaders of physician organizations. So in some ways I lead millions of physicians on the board of the hospital of leading academic networks of research networks. And so it does give me a special little twinkle to each achievements to do it as a patient and to do it as a Black female transplant recipient. And so it's sort of like Ginger Rogers doing everything backwards in high heels.
Bryetta Callowa...: That's exactly right.
Donna Cryer: To do it as a patient, to lead these things where no patient has gone before, makes all of them a little bit special, but the ones that are awarded by physicians [inaudible 00:42:43] are particularly satisfactory to me.
Bryetta Callowa...: That's amazing. And I'm big on having proof points, like proof of concept, that type of an award is a proof of concept. It's like if done well, you can't be as knowledgeable about your care, about the system, to the point where it can be recognized. Other folks will recognize the value of the time that you've put in to learning enough about your own care to advocate for it in a really strong and intentional way. So I think that's amazing and I do... I can see how it would be particularly fun to sit in those spaces and with your perspective, I think that's amazing. So my last question for you is what is on the horizon for Global Liver Institute? Are there any things that listeners, the public can support? How can we get involved? What can we be looking forward to that's coming to us soon?
Donna Cryer: Yes. So just been launching our Liver Health is Public Health campaign and we had a special issue in The Guardian in the UK, but we're working with so many organizations to make liver health part of public health. And so people can learn about that on our website, globalliver.org, and we are now engaging in multiple ways with the White House about hepatitis C elimination in particular. But I think as we work with them, the ability to see that really elevating it to a liver health campaign across government agencies is a real potential for the first time for the liver community. And we're so excited to be in the leadership position with the White House on that.
Bryetta Callowa...: That's awesome. And for everyone who's listening, we'll obviously have all of that information in the description for this episode because I do think that there is a wonderful opportunity for folks to just learn because something that you said earlier in the episode, which I think is so important, it's we all have a liver. So just having core knowledge around liver health is something that every person can do independent of whether or not you have a specific health crisis or anything that's going on. So I think just having that base knowledge. And also I do think that there's something really important about actually learning how to advocate for your healthcare. And that's something that has been a throughline in this conversation, which is just learning the language and the ways in which to do that feel really, really important. I am so pleased that you came to chat with me today, Donna. I'm wondering, are there other ways that folks can engage with the Global Liver Institute? So you have the website, are there any others?
Donna Cryer: We have A Facebook page. Yes, we have a Facebook page, we have Instagram, we have Twitter, we have a donate button on our website.
Bryetta Callowa...: Very important.
Donna Cryer: Don't need me to say that. We have every year and increasingly throughout the year, we have Advanced Advocacy Academy where patients can come to be trained. That information is on our website. There's so many ways to engage with us and so many things on our YouTube channel as well where you can get a lot of information and interviews of patients and thought leaders about different aspects of healthcare, including a lot of Black physicians who are just remarkable throughout gastroenterology and hepatology. We work a lot with the Association of Black Gastroenterologists and Hepatologists and we love featuring them. So you can find that on our YouTube channel as well.
Bryetta Callowa...: Thank you so much, Donna. So you heard that here, everyone, there is no excuse. You can find them on social, you can find their website. We love a good YouTube channel, so we love all that. And I heard a very important, there is a donate button, so I want everyone to not bypass that when they're visiting all this information. Thank you Donna for coming and speaking with this audience. To everyone who's listening, I hope I yet again delivered on my promise to bring you interesting, amazing people who are doing interesting and amazing things. Until next time, I want you to listen to this episode, share it with at least one other human being and don't forget to follow Donna and the Global Liver Institute in all of the places they can be found. Have a great day everyone. Bye.