Join physicians, researchers, and patients at a half day event to discuss the latest in Nephrotic Syndrome Research. Click here to register now.
Since 2014, NephCure Kidney International (informally called NephCure) enthusiastically collected your survey responses in a systematic and safe way to help researchers and doctors better understand Nephrotic Syndrome, FSGS, and related diseases. Over the past few years, we have released annual reports about the trends of diagnosis patterns, treatment options, and your opinions about research and clinical trials. In addition, through our participation in larger networks of data (thanks to our involvement in PCORnet), we learned about electronic health record access for Nephrotic Syndrome patients, sleep habits, and potential mobile app use.
We are pleased to release the final Annual Report, which includes data collected over a 13-month period between 2017 and 2018. While the NephCure Kidney Network Patient Registry is no longer open to registrants, the data will be available for researchers to study for the next 3 years (should they be approved by a patient-centric committee for data access).
If you have any questions about the NKN Patient Registry, please email firstname.lastname@example.org.
NephCure Open Access: Spotlight On Jessica Martin, Chief Operating Officer
This March, we celebrated Jessica’s five-year anniversary with NephCure Kidney International. During her tenure, Jessica has been involved with NephCure at all levels and knows the nuts and bolts of everything we do. In fact, in response to her wealth of knowledge, we thought it apt to bestow upon Jess her very own hashtag: #JessKnows, which we use around the office often!
We chatted with Jessica recently to commemorate her five years with NephCure. Below, we offer a closer look at who Jess is and what her role at NephCure entails.
NephCure Kidney International: You’ve been at NephCure for five years. What’s your favorite part about your current job?
Jessica Martin: It’s different every day. I don’t know what any given day is going to look like until I walk through the door. There’s always a surprise waiting for me in my inbox!
NephCure: What are all the different things that you do?
Jessica: Finance, HR, Admin, Legal, Facilities, IT. Though we outsource some of that.
NephCure: In 60 seconds or less name all the positions you’ve held at NephCure.
Jessica: Oh my gosh! Office Administrator, Grassroots Operations Manager, Director of Operations, National Director of Program Operations, and now Chief Operating Officer. And I think that’s in order!
NephCure: In your five years here, what has surprised you most?
Jessica: Probably the lengths that people will go, specifically caregivers and family members, to get something done for their patient. We know people who have flown across the country for a second opinion, or tried to obtain foreign currency to trade in for donations, and all kinds of different fundraisers. The ideas that people come up with to try to raise money or find a cure always surprise me.
NephCure: What event do you look forward to the most?
Jessica: All In for a Cure. Because of the candy bar!
NephCure: Describe the candy bar.
Jessica: When I say candy bar, it’s not like *a* candy bar. It’s a table full of candy—a “candy kiosk,” we call it. The first time I saw it I was like, “Oh my gosh, these are my people!”
NephCure: What has been your favorite memory of an event?
Jessica: Probably Advocacy Days, and also our Volunteer Leadership Summits. At both of those, you get to see all these patients and family members get together. I think we could have an event where we just put everybody in the same place and let them talk and tell their stories to each other. That’s what Advocacy Day used to be—it was the only time that we could get patient families from around the country together. We used to have Advocacy Days where people would tell us, “This is the first time I’ve ever met another patient.” We bring strangers into a room and they leave hugging and crying, and they all have each other’s phone numbers, and they’re saying, “When am I going to see you again?” It’s amazing. Sometimes later, I’ll see on Facebook two people that I know didn’t know each other before the event, and now they’re all over each other’s Facebook pages and cheering each other on.
NephCure: Is there something that makes you realize, this is why we’re here?
Jessica: May was very tough. We lost three patients, two of whom we knew really well. We were all really upset. When something like that happens, obviously there’s a part of me that feels like, yes, that’s why we do this. But we also can’t get mired down in it. We have to be able to come back up and keep working.
There’s a lot of nights or weekends where a staff member will see an article or Facebook post that references FSGS or something related to our work, and we’ll text each other, “Oh my gosh, did you see this?” It’s a part of our lives now. When I get a text at night—and I have a different ringtone for work people—I might think, “Oh someone is going to be out sick tomorrow or something.” Then I’ll look and see that it’s something good that happened that we’re sharing with each other! I like that, because it’s not just a job. It’s a part of our lives and what we do.
I will say—I had been working here for about 3 months when I was at a jewelry party and happened to overhear someone say, “He didn’t feel well. We took him to the emergency room, and they said he was spilling protein.” I said “Wait! Tell that story again!?” I was like, “Call me at work tomorrow, we’re going to get you to the right doctor.” I listen for that—I listen for people saying kidney disease, or protein spilling. I think I always will.
NephCure: How did you end up with NephCure?
Jessica: I had cancer 13 years ago. During that time, I started volunteering with a cancer-oriented nonprofit. I knew nothing about nonprofits, I had never done charity work or anything before, and I loved it. I said to my husband, “If I’m going to go back to work, this is what I want to do.” His famous line is, “Why would you work for a nonprofit, it says right in the title you’re not going to make any money!” But I had worked in software before and thought, “I’m not going back to software. If I’m going to put the kids in daycare, then I have to do work that I care about.”
I started looking for admin work because I’d never worked in nonprofits before. I found NephCure and had no idea what it was. At the time, it was run by a management company who ran 3 other nonprofits. When I interviewed, they asked if I wanted to work for NephCure or one of the other nonprofits, a community fund. I was like, “Ah, I’ll go with the healthcare one.” Then with people leaving and roles moving around… As it turns out, I did have some skills that I had kept to myself for a while. I was like, “Yeah, I could probably take on some other roles.” I call it the perfect storm—the way things evolved, this being where I landed.
NephCure: Last year was a pretty momentous year for you. What happened?
Jessica: Last year, our CEO resigned, and our board asked me to take on those duties with the help of some board members. I did and learned a lot—the biggest of which is that I don’t want that job! It was invigorating, it was an adrenaline rush, and my kids didn’t talk to me for periods of time because I was traveling so much and they were mad. I know that I don’t want to do that—I don’t want to travel or work those hours anymore. But I learned a lot, not just about NephCure, and not just about the responsibilities necessarily, but about being that person where “the buck stops here.” It’s very stressful. I am ridiculously proud of how we all handled things though—everybody stepped up to do more. We got through. I learned to delegate, I learned to outsource, I learned to interview CEOs. My proudest moment was the day that Josh started! Because I finally knew that we did it, we got through that year, and we had who we needed to be able to continue. That year will go down in history, certainly in my life, as one of the craziest ever.
NephCure: What excites you for the future of NephCure?
Jessica: I feel like we’re more stable than ever because of the people we have here now. We know what we’re doing, and we have this singular purpose with clinical trial awareness. We have a ton of work to do, but just the fact that we have all these pharmaceutical companies talking to us still blows my mind!
We have an end goal. We’ve always talked about finding cures or treatments, but there was not necessarily always a tangible plan in place for accomplishing that. There was a little bit of throwing things against the wall and seeing what stuck. We’re done with that now. We know what sticks, we know what works, and we know what we need to do. That makes it feel a little bit easier—there’s all these smaller milestones that make it tangible and easier to get to. I don’t know that we’ve ever fleshed it out in that way before.
NephCure: Anything you want to add?
Jessica: I’ve worked at a lot of places, but I’ve never worked anywhere for longer than two years. That I’m still here is a testament to the fact that I’m not bored—we’re doing some really exciting stuff and moving the needle forward.
The group of people we have working here—and this is not an accident, this is on purpose—are the most hardworking, ethical, passionate, smart, funny, compassionate people I think I’ve ever met. The group that’s here has seen some things, they’ve been through heartache, they’ve been through change, they’ve been through you-name-it. And they continue to do a great job. I certainly couldn’t have gone through last year without these people. There’s no question.
We’re honored to work alongside Jessica in our fight to find a cure for FSGS and Nephrotic Syndrome. Help us wish her a happy anniversary by leaving her a note below!
NephCure hosted the 12th International Podocyte Conference in Montreal from May 31 to June 2, 2018. With over 309 attendees, including researchers, study coordinators, pharmaceutical representatives, physicians, and trainees, the conference was a huge success and one of the largest in the conference’s history. New this year was a deliberate focus on “bench to bedside” research, concentrating on applying research uncovered in the lab towards improving treatments for patients.
The biannual conference – most recently also held in Germany, Miami, and Israel – focuses on a specific cell in the kidney called a podocyte. These cells have “foot processes” that look like tentacles, which wrap around capillaries to help the kidney filter blood. The tentacles and general shape of the podocyte resemble an octopus, which is also the conference’s mascot!
NephCure CEO Josh Tarnoff introduced the conference on a positive note: While 20 years ago little was known about the function of the podocyte and how it related to chronic kidney disease, today, in part because of the connections made at past Podocyte Conferences, we have huge developments in treatments. There are now many pharmaceutical companies interested in Nephrotic Syndrome, and they are seeking to develop treatments as a result of discussions at these biannual conferences.
As in past years, NephCure hosted a patient education workshop for families in conjunction with the conference. The one-day program featured talks on treatment options, updates in research, and dietary recommendations, and brought together 25 patient families and more than 75 people impacted by Nephrotic Syndrome.
In Nephrotic Syndrome, the kidney’s podocytes are not functioning properly. This loss of function is one of reasons that protein leaks into the urine. It was once thought that when podocytes stop functioning, they could not be restored. However, Podocyte Conference Steering Committee Member Stuart Shankland discussed new research in regenerating these cells in animal models with the intention of developing treatments for human patients during his presentation, “Developmental origin of podocyte in injury.” Shankland has been researching how parietal epithelial cells may be able to repair or regenerate injured podocytes. Both parietal epithelial cells (PECs) and podocytes are a part of the Bowman’s capsule, a membrane that surrounds the glomerulus of each nephron in a kidney.
Ryuichi Nishinakamura of Japan’s Kumamoto University spoke on “Dissecting podocyte development and disease in kidney organoids.” An organoid is an group of artificially-grown cells that resemble an organ. Researchers use organoids to learn more about how organs and organ cells like podocytes function. Anna Greka, a researcher and physician at Harvard’s Broad Institute, delivered a talk in the Advances in Therapeutics for Glomerular Nephropathies portion of the conference. Her lecture, “Mechanism-based precision therapies for progressive kidney disease,” in addition to many other presentations, emphasized the importance of personalized treatments for patients.
The feedback we received on the conference was overwhelmingly positive, and many participants said it will impact their practice and research. One participant said, “More collaboration with basic scientists will lead to find[ing a] cure for podocytopathy,” meaning all diseases that affect podocytes. Other participants commented that the conference helped them in “Recognizing novel pathways of disease that will provide targets for ongoing and upcoming clinical trials.” The researchers were grateful for a space to share their developments and forward the field. Another idea common to the evaluations was the gift of hope for the future many of these talks provided. One responder explained that the conference “raises optimism for future care.”
The multi-faceted concept of research, from basic science to clinical trials to cures, is ingrained in NephCure’s DNA. We are invigorated by the discussions at this year’s Podocyte Conference and look forward to hosting the next conference in Manchester, England in 2020.
(Photography by Photos FERA – www.photosfera.ca)
Why I Do What I Do: Spotlight on Kara Jones, Patient Mom
On October 6th, the first annual Silicon Valley Pig Jig will be rocking the day away at the San Jose Giants Muni Stadium in California. The Silicon Valley Pig Jig (or SVPJ) is an all-day live music festival, with great bands, delicious food, an amateur barbecue competition, beer garden, craft vendors, kids zone and games, all set in a fun tailgate environment. Number 1 hit country music singer Dylan Scott, with singles “My Girl” and “Hooked,” is headlining. Longtime NephCure supporter and patient mom, Kara Jones, is leading the efforts behind Silicon Valley Pig Jig, and she recently told us more about what to expect at the upcoming inaugural event.
NephCure Kidney International: How did you first find out that your son, Christian (known affectionately as Cheech), was sick?
Kara Jones: It started when he was 2 years old. We were in the process of potty-training him, so I didn’t realize how infrequently he was going to the bathroom. He had what I now realize are all the classic symptoms—puffy eyes, edema, and so on. One night he was running around in his diaper, and his belly was extremely distended. My mother-in-law felt his stomach and said, “This is not good.”
We took him to the doctor right away. We got lucky, because our pediatrician had done rotations in the nephrology department and was immediately familiar with Nephrotic Syndrome. We were quickly introduced to our doctors at Lucille Packard, and Christian has had those same doctors now for 16 years.
Cheech is steroid-dependent and a frequent relapser. He’s been on Prograf, Cytoxan, Cellcept, and Cyclosporine. He’s done three rounds of Rituximab. Now he’s on Myfortic, which is supposed to be less harsh on your GI system. I’ve lost track of how many relapses he’s had and how many times he’s had to go to the hospital because of them. His immune system is a wreck. I often wonder if he was born with a weak immune system, or if all the years of the immunosuppressants have wreaked havoc on him.
He graduated from high school in May. One of his good friends has family in France and invited him to go over there for a month this summer—his first trip abroad! As fate would have it, three days before he left, he started to relapse. Prior to that, he had not relapsed for close to a year. For the first time ever, he is managing a relapse on his own. He just texted me to say that he’s finally trace as of this morning.
NephCure: Throughout so much of Cheech’s journey, I know you’ve been deeply involved with NephCure. How did you first get involved?
Kara: It was at a pivotal point for me. Cheech was in the fourth grade, and he had just had a bad relapse and had been in the hospital. I knew he wasn’t feeling well, but he wasn’t throwing up and didn’t have a fever. I’ve always tried to treat him just like any of our other kids, so I said, “Look, you’ve got to go to school.” I dropped him off, and he was so bloated and overweight and chubby-looking. His clothes didn’t fit right. He walked into that classroom all by himself with his head hanging so low. It was such a painful time, to watch him go through that. It was devastating. I drove home and thought, “I am so tired of this.” I was tired of taking him to doctors’ appointments and giving him medicine that we didn’t even know if it was working, and all the damage that I knew it was causing him. I said to myself, “I’m done just watching this happen. I have to be more involved.”
I went home and called someone from NephCure and said that I wanted to hold a walk. I got lucky, because a lot of my friends had watched Cheech suffer, and saw the pain I was going through too, so they jumped in to help. We had the first walk in 2010, and we did it every year since then.
NephCure: Where did you get the idea for the Silicon Valley Pig Jig?
Kara: That came from the Tampa Pig Jig. I was so impressed with what a bunch of young men could do that I figured a bunch of moms could do it, too! The walk was great and I enjoyed the process, but I got to the point where I was yearning for a bit more. We wanted to do something that we thought would get our early 20s and teenage kids more excited about going and being involved.
NephCure: Can you describe the event—what will the sights and sounds be?
Kara: It’s going to start early in the morning. There will be people laughing and having a great time, barbecue teams setting up, people having fun with their tailgates—we’re going to have an award for the best tailgate environment, so people will be decking those out! Everyone will be having a lot of fun, there’ll be great music playing, and there’ll be lots of good smells, smoky meats cooking in the air. All of this will be taking place in one of my favorite places in San Jose—the San Jose Giants Muni Stadium! My husband and I started going to games there before we were even married, and I feel like our kids spent their summers watching baseball games there. So I picture this all happening at a spot that’s personal to me, surrounded by 20 to 25 of my closest friends who have put their heart and soul into this great event. We have amazing support from the Silicon Valley and San Jose community and so many great businesses. Everyone is making us proud to follow in the footsteps of Tampa Pig Jig!
NephCure: Can you describe the barbecue competition?
Kara: Businesses or individual teams can join the barbecue competition. We’ll have about twenty teams, and they’ll be judged on tri-tip, ribs, wild card, and best overall. We’ll also have an award for best tailgate setup. We’re lucky to have the California Barbecue Association coming out to help us with the judging. Even though this is a non-sanctioned event, they’re going to judge the entries as if it were, so the barbecue teams will be able to get professional feedback on the foods that they turn in.
NephCure: Is there going to be a kids’ area?
Kara: Yes, we’ll have a whole kids’ zone with inflatables, face paint, crazy hair, games and something we always did at the walks—cards for kids in the hospital. We’re carrying on that tradition, so there’ll be a card table set up with all the supplies if you want to make a card for children who are in the hospital.
NephCure: Will there be something for patient families at SVPJ?
Kara: Yes! Our goal is to have at least 20 patient families at the Pig Jig. They’ll be treated as VIPs and will receive an All-Access Pass. We would love for patient families from near and far to come and meet and mingle with others. We’ll have a gathering for everyone at 2 pm in the sponsor lounge. I’m hopeful that some of the health professionals from Lucille Packard Children’s Hospital will be there, too.
NephCure: I’m so impressed with how many sponsors you’ve gathered. I know many people are daunted by the idea of asking friends and business owners for money. How did you learn to do that?
Kara: You have to find the right people to help you. I have been a stay-at-home mom or teacher for most of my life, so I have not been hanging out with CEOs or decision-makers of companies. But I am lucky that my husband does and has friends who do as well. If you personally don’t have those connections, find a friend or someone you trust who is well-connected and invite them to be on your sponsorship committee. Ask them to help you by making those introductions.
Our friends have really gone to bat for us. One gentleman who’s done a lot recently said to me, “Kara, you have the passion, and you can tell the story, and that’s all that people really need to hear. How can they not jump on board?” Our friends have made so many introductions and gotten us in front of a lot of business owners. They’ve really taken on this cause with the same passion that a parent of a child who was sick would.
There’s a group of 4-6 of us who have been meeting every other week since February. We go over our list, manage our contacts, figure out if there’s any overlap with businesses or who knows who. Even though we’re all volunteers, it’s not really a “volunteer gig”—we’re all taking it very seriously!
I hate that I’m in this situation, but who better than me, as a parent, to make the ask. Because it is so personal—I have to find a cure.
NephCure: Is there anything else we should share?
Kara: Yes! Partnering with KRTY and the San Jose Giants has been vital for us. Being able to say to potential sponsors that we’ve got KRTY behind us and we’re doing this at the San Jose Giants Muni Stadium has given us immediate credibility. KRTY have been so supportive in getting good music for this event. I cannot emphasize the importance of those two parts of this “puzzle” enough.
The volunteers inspire me every single day. On Sunday, the two women who are spearheading volunteers were working all day on this together. On Saturday, the two women who are doing merchandise were putting their spreadsheets together and working. And they all work full-time! I am just amazed at how much of their own personal time they’re giving up. My friend Teri Molinaro is a full-time lawyer with three kids, but she is dedicating above and beyond. It’s amazing, what they’re all doing and how much they’ve backed up Pig Jig and NephCure.
Throughout all of this, my many years with NephCure and spreading awareness and fundraising, my main goal is that one day, everyone knows about NephCure and knows about Nephrotic Syndrome.
Learn more about the Silicon Valley Pig Jig at their website: siliconvalleypigjig.com
If you’re interested in learning about sponsorship opportunities, please contact Kara: email@example.com
If you’re interested in attending the Silicon Valley Pig Jig as a patient family, please contact Allison to register: firstname.lastname@example.org
Know your options. Talk to your doctor about clinical trials.
Today, Congressman Ted Deutch (D-Fla) recognized NephCure on the House floor for our work in advancing research for FSGS and Nephrotic Syndrome. He asked his colleagues to support increased NIH funding, which will help advance Nephrotic Syndrome research and better enable us to find a cure for these conditions.
We sincerely thank Congressman Deutch for his efforts to raise awareness of NephCure and Nephrotic Syndrome, and urge you to watch his speech below: