Welcoming Our New CEO, Joshua Tarnoff March 6, 2018 by Lauren Eva NephCure Welcomes Joshua Tarnoff, Our New Chief Executive Officer The NephCure Board of Directors is thrilled to announce that Joshua M. Tarnoff has joined our team as Chief Executive Officer. Read the full press release here. Recently, we spoke with Josh to learn more about him and what he’s looking forward to in his new role. Read more about Josh and what’s on the horizon for NephCure in our full interview with him, below. NephCure: Could you lead us through some of the professional experiences that brought you to NephCure? Josh Tarnoff: From a professional perspective, I’ve been in the healthcare industry for over 30 years in various management roles. One of my passions in particular is in growing organizations: it’s not uncommon for me to be the first employee in an organization or new start-up and take it for a 5-year run or so to grow it. At AstraZeneca, I started up one group, and by the time I left, that unit was doing a billion and a half dollars in sales. At Complexa, it was pretty much the same, and they’re now on their way into a Phase II clinical trial. This also applies to civic organizations, where I started a co-ed youth group. So my experience, as well as what I enjoy, is in taking organizations to the next level. If he’s not at the office, you’ll probably find Josh outdoors—he loves backpacking, sailing, fishing, and scuba diving, to name just a few of his outdoor hobbies! NephCure: What is it about working for NephCure, a patient advocacy group, that interests you? Josh: It’s both personal and professional. On the personal side, I was bitten by a rattlesnake about 15 years ago, and I wound up with extreme kidney failure and interstitial nephritis. It was life-threatening. I had to take massive doses of steroids for a long time, and I now live with long-lasting side effects from those drugs. I have cataracts and metabolic conditions going on that will live with me for the rest of my life. So there’s a personal touch in recognizing that we need therapies for kidney disease that just don’t exist right now. And I know that in my experience with kidney disease, I’m one of the lucky ones. But I can relate very much when I hear patients talk about what they’re going through and there not being many options. From a professional perspective, NephCure is an organization that I’ve seen, from the industry side, really make a difference. NephCure is an organization that’s been around for a relatively short time—not like many of the large organizations that have been in existence for 50+ years—and in that short amount of time, has made a tremendous impact. Not many years ago, there were absolutely no alternatives to steroids for these diseases; we now we have the FDA collaborating with key opinion leaders, industry, patient advocacy groups like NephCure, and patients. Through this collaboration, we have been able to witness the modification of drug approval guidelines, which made it easier for companies to bring new therapies into late-stage research. At the end of the day, we now have a pipeline of drugs that are coming through that target FSGS and related nephropathies. Through its advocacy and being the ‘center of the wheel,’ this is an organization that’s really done something tangible: there are now new treatments on the horizon that didn’t exist before, largely because of NephCure. To join NephCure at this time is extremely exciting, because we’re doing things: these potential new treatments are real, patient outreach and connections are real, and clinician awareness is growing. Now it’s about taking the organization to the next level and making sure that effective treatments come to reality, making sure clinicians are trained in timely diagnosis so that patients get the care they need, making sure people are aware of what’s going on, and getting additional funding and organizations involved. This is the part where we deliver. NephCure: What do you see for the near future of NephCure? What do you see happening in the next five years? Josh: Today, awareness within the nephrology community is growing, but there is still some way to go. Earlier diagnosis and treatment are key. FSGS and other forms of Nephrotic Syndrome still go undiagnosed or misdiagnosed for long periods of time, in the early stages of the disease when the kidney is most vulnerable. We need to continue to drive awareness within the healthcare community to get ahead of the disease progression at this sensitive time. Another key is that there are now drugs that are about to be in Phase III of the clinical trial process and others at various stages clinical research—we have effectively moved beyond the basic research labs and into phases that hold promise not too far away. Meanwhile, there are thousands more patients developing this disease each year. It’s also a matter of getting the right care to these folks and expanding the patient registries that already exist. It’s building on some of the incredible work that’s already been done. In the next five years, we ought to have effective therapies available for patients that weren’t there before. All of this started with NephCure’s push nearly 20 years ago. In the near future, I see NephCure expanding its relationship with government agencies, clinical academia and the broader pharmaceutical industry. We will continue to have relationships with key opinion leaders so that we make sure there’s a seamlessness between a newly diagnosed patient and the future of their care. We will continue to bring all of these entities together and push the research and the care into the next level. Largely due in part to the work at NephCure, we now have a much better understanding of the pathophysiology of FSGS and related nephropathies. The role of the podocyte for instance was not as well appreciated for a long time. We have also seen data presented that directly associates levels of proteinuria with survival—something we long suspected but now have evidence to make that link. We know much better what needs to be done. Awareness and understanding has led to more involvement with people who develop clinical therapies. I think the organization has done a wonderful job of sponsoring grants for early phase research. As you know, it takes a new drug 15 years to get on the market. So NephCure planted those early phase research seeds long ago, and because of that, there are now new therapies being developed, and there are drugs that can be repurposed to treat these diseases. The good news is that more organizations are coming in. We have to match the progress that’s going on out there, step up our game, and make sure that the organization is even more involved with some of these key stakeholders. NephCure: Do you think we’re at a critical moment in terms of needing to act before some of these players perhaps lose interest? Or do you feel like it’s more of a waterfall effect, where new treatments are going to happen, and we want to be a part of this obviously to help move it forward, but the momentum is taking on a life of its own? Josh: If we let things will happen on their own, they will occur at a pace that’s really not acceptable. We have patients who are suffering and who are being debilitated, and the pace to get effective treatments in their hands can never be fast enough. It’s our job to be the center of the wheel, to be the catalyst and amplify the progress to be bigger and faster. You only get that by having real collaboration among the key stakeholders: patients, the FDA, researchers, physicians, and industry. NephCure raised awareness of these diseases from virtually nothing 20 years ago to much better awareness and understanding of the disease today. That led to basic research that has in turn evolved today to late-stage clinical research of new therapies. Things have significantly accelerated with the FDA’s addressing needed updates to drug approval guidelines, but we really have to stoke that fire, otherwise things will plod along at a slow pace. There’s a lot of opportunity for real breakthroughs in the next 1 to 5 years. There’s a lot of interest now that wasn’t there before, and we need to continue to play the leadership role and pull it all together. This is an organization where people have done an incredible job. I have the benefit of coming in to stand on their shoulders, which is really unique. We’ve got all these potentially impactful events on the horizon, and there’s a lot more attention than there was; there is a strong momentum now. I’m lucky to be able to come in at this point and work with everyone to make sure that we’re ready as this all takes off. We have to continue to be the catalyst for all of this, and make sure that the dialogue continues, that people continue to keep FSGS in the forefront, and manage it all. Because if not us, then who? I’m honored to be a part of this organization. It’s really humbling. This is something that I’ve always aspired to do. When people ask, “Where do you see yourself in ten years?”, I’ve always thought I would try to transfer some of the work that I’ve done into an organization that’s closer to the patient and more front-line. When you’re with NephCure, you’re at the center of the wheel. And NephCure has a great mission. All the different parts we talked about—they’re not going to come together on their own. For me personally it’s very rewarding, because I’ll be able to work closer with patients, physicians, and government. To be able to have the time and the resources to do that, and make more of an impact than I had previously, is personally incredibly rewarding. Join us in welcoming Josh to our community. In the coming months, he’s looking forward to meeting you at events, learning sessions, and fundraisers around the country. Feel free to leave a note to Josh in a comment below! As always, thank you for your support as we move into the next phase of our mission to get better treatments and a cure for FSGS and other diseases that cause Nephrotic Syndrome to our community. Together, we will find a cure.