Spotlight on Lauren Lee, National Director of Research and Engagement February 1, 2018 by Lauren Eva NephCure Open Access: Spotlight On Lauren Lee, National Director of Research and Engagement In January of this year, we celebrated our National Director of Research and Engagement, Lauren Lee, and her five-year anniversary of serving the patient community at NephCure. During her tenure, Lauren has been a tireless advocate for the cause, with a sharp eye for innovation and new possibilities. Traveling all over the country in her various roles with NephCure, she has never forgotten a face, story, or name. NephCure’s growth and maturity as an organization would simply not have been possible without her contributions, and it is an honor to work alongside her. To commemorate her five-year anniversary, we’d like to give you a closer look at who Lauren is and how she approaches her role at NephCure. Below, we share our recent chat. NephCure: Five years is a long time, and a lot has happened since you’ve been at NephCure! But I wanted to start with a brief overview of what brought you here. Were there other positions that helped lead you to this point? Lauren (left) with NephCure staff member Chelsey Fix. Lauren Lee: I’ve spent most of my career working in various nonprofit settings. The most related to NephCure prior to coming here was working at the University of Pennsylvania Health System, where I did fundraising and development for various departments, including medical research fundraising. After taking some time off to raise kids, I started working for a small cancer-based pharmaceutical start-up. They were looking to develop an immunotherapeutic medicine for acute myeloid leukemia. It was there when I was developing investor fundraising materials, which were more technical but were also centered around telling a compelling story about the patients and the disease, that I started to think about how can you make a case for drug discovery or disease research by putting patients at the center of it all. When that particular company started running out of money, I knew that I wanted to keep working, and I applied to various nonprofits because that’s where I feel most at home. Happily, I ended up at NephCure. NephCure: What’s your favorite thing about NephCure today? Lee: My favorite thing about NephCure is that we’ve taken a mission that is often hard to articulate and get people excited about—funding medical research around two rare diseases—and turned it into a meaningful movement and message. The landscape around NephCure has changed significantly just in the five years that I’ve been here. When I first started, we were purely focused on giving out grants and raising money to fund young investigators and various consortia, which felt very lab-oriented. While that work was very important and jump-started a lot of the breakthroughs and advancements that we are now able to see and use today, we were less focused on engaging the patients in the research and in our day-to-day work. One of the things that’s happened, amazingly, in such a short amount of time, is that we’ve taken the mission and articulated it to our patients in a way that helps them understand how vital they are to our goal of finding better treatments and a cure for these diseases. Our patient community now really understands that they’re very much a part of this mission. None of the research that’s happened, whether it be in labs or in drug discovery, or anywhere, can happen without their involvement and enthusiasm and support. NephCure: What do you like about your current position as National Director of Research and Engagement? Lee: I like that it marries understanding the unique experience of living with Nephrotic Syndrome and creating programming for patients with what was once a sort of sterile mission to fund research. Now we have a story to tell around it, because our early investments in research have opened up so much opportunity. We’re seeing that the results of those investments have stirred the pot in getting researchers, biotech companies, pharmaceutical companies, and the government to take notice and start investing in and thinking about Nephrotic Syndrome. In addition, we now have a more mobilized patient community that can get involved in the process. Lauren (left) representing NephCure and presenting a Nephrotic Syndrome symposium in Boston, MA. And it’s fun! It’s been a wonderfully serendipitous opportunity, at least for me personally, to be creative. Early on, we didn’t think about programming specific to patients necessarily in a creative way—the bulk of our patient education was basic Nephrotic Syndrome 101 information. Today, we also offer programming that helps educate and engage patients around their mental and emotional health. We’ve recognized that not only is Nephrotic Syndrome rare, it’s chronic, and we’re trying more and more to understand what that means for our patients. We’re constantly thinking about how we can provide resources that will help them better deal with their disease and be equipped to feel better, to have more meaningful conversations with their doctor, and to be more proactive in their health. NKI: Which leads into my next question—what are your plans and your department’s plans for 2018? Lee: Lately, there’s been a lot of attention focused on potential therapies and treatment options for Nephrotic Syndrome, which is wonderful. We’ve had the opportunity to be part of these discussions with pharmaceutical companies and smaller biotech companies, and we are now viewed as partners to their different plans for developing these new therapies. A lot of the focus in 2018 is going to be on helping connect our patients to clinical trial opportunities that they can participate in, while also continuing to educate them on what it means to participate in research. I believe that there are research opportunities available for everyone, no matter who you are, or what stage you’re at in your disease journey. Perhaps you’re not eligible for a particular clinical trial, but we have the NephCure Kidney Network Patient Reported Information Registry that people can participate in by completing a survey about their health journey. There are also a number of longitudinal health studies, like CureGN and NEPTUNE, that we can direct people to. The more we can get people educated and engaged in these different research opportunities, whether they be clinical trials or some of these longitudinal and observational studies, the better off everyone will be, because we’ll be able to continue to answer important questions about Nephrotic Syndrome that will lead us directly to better treatments and a cure. NKI: Is there a patient story or experience that reminds you why we do what we do every day? Lee: Certainly—connecting with patients one-on-one, which I wish I could do more of. Anytime I sit down with a patient and listen to their concerns and struggles over being diagnosed, or having a child or a spouse diagnosed with Nephrotic Syndrome, I’m deeply touched. Lauren (bottom row, second from right) during a patient panel in 2017. One of the things that’s been exciting and heartwarming for me are the patient panels that we’ve been presenting over the past couple of years. The panels bring patients in front of an audience of clinicians, fellows, residents, pharmaceutical representatives, and researchers, and we allow that audience to hear straight from the patients about the emotional struggles and other aspects of living with the disease that they perhaps never thought about while treating them during a 20-minute appointment. Bringing the patient story alive for this audience and creating opportunities for “Aha!” moments helps the doctor or health care professional go back to the clinic and do a better job of communicating with the patient. It helps them understand what a Nephrotic Syndrome diagnosis means to a family—it’s not just impacting the patient, but everyone around them. NephCure continues to find ways to connect patients with these audiences, and that’s made all the difference—both for the patient and for the healthcare professional or pharmaceutical representative. Taking their interaction out of the doctor’s office and putting it in a Friday forum where you’ve got a large group of people spending a day learning and connecting benefits everybody, all around. NKI: I know you are incredibly dedicated to NephCure, and you spend a good amount of time traveling for the cause. But what are you doing when you’re not working for NephCure? Lee: Being a mom to two teenagers! And juggling activities, heavy homework loads, good days and bad days at school, and helping to guide them. Personally, I’ve also been doing a lot of hiking, and I do a ton of yoga. But spending time with the family is what I do most. That’s my priority. NKI: Is there anything you’d like to add? Lee: What I’m really proud of NephCure for, and what I’ve seen come to fruition—and I see it play out everyday here—is the fact that we are the anchor for this disease. We have convened people from all over. All of that work in trying to know what’s happening in all of the different realms, with physicians and with the pharmaceutical industry, the FDA and the NIH; it’s now really playing out in that those entities look to NephCure to take the lead, to facilitate connections, and to be the hub for all Nephrotic Syndrome research and activity. To be the organization of record. I think that’s important for our constituents to know. My inbox is filled everyday with messages from all of these different entities seeking us out. We’re thrilled to be celebrating this anniversary with Lauren and look forward to watching her continue to make strides on behalf of patients and families with Nephrotic Syndrome around the world. If you’d like to speak with Lauren, please feel free to leave a comment below, or send her an email at LLee@NephCure.org. Congratulations on a fantastic five years, Lauren!