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!

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: siliconvalleypigjig@gmail.com

If you’re interested in attending the Silicon Valley Pig Jig as a patient family, please contact Allison to register: akostiuk@nephcure.org

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:

NephCure Open Access: Spotlight On Deborah Pollock, National Director of Advancement

Deb joined NephCure last fall, but she is such a natural fit within the NephCure family that it feels like she’s been here with us all along. We’re so grateful to have her on the team, and she’s already made a huge impact on our work. We spent some time with her recently to learn more about what brought her to NephCure and what her plans are for the future of NephCure’s fundraising.

NephCure Kidney International: You have a deep and varied history in the fundraising profession. Could you describe some of the roles that you lean on in your position at NephCure?

Deborah Pollock: I started my career in fundraising, gosh I can’t believe it—23 years ago—kind of by mistake. I fell into it. I started with a part-time, temporary fundraising position at the National MS Society. I dove right into it and did pretty well, so that by the end of the summer they had hired me full-time. That was my first full-time fundraising position. I then started managing walks and some of their other campaigns. Within about two years, I had become a regional manager, overseeing staff and events.

From there, I had similar roles but kept trying to continue to learn and grow. I’ve also worked for the American Diabetes Association, the American Red Cross, and March of Dimes. In those roles, I did almost everything from being an area manager to executive director for a region and also working in major gifts. Those roles led me to loving this field, continuing to learn, and having the ability the ability to manage events, staff, and volunteers all at the same time. It was all great experience.

As a manager or director, I’ve always been what I call a “coach player.” Not all directors play this kind of role: I would oversee the chapter or the area, but in addition, I also always had a few of the signature events that were my own. I think that helped me understand the role of those who are coordinating events and those who are on volunteer committees—by continuing to have to work in those roles has helped me to empathize with every step of planning an event.

In the nonprofit world, you really are a jack of all trades. No nonprofit has a ton of money where you’re hired to just play one role. Even if you’re coordinating walk sites, you’re still doing the communications, you’re still doing the marketing, you’re the recruiter, the sponsorship writer, the team-builder, the logistics lead. I’ve always had to do all of that, and it’s been a wonderful learning experience.

NephCure: You’ve been part of the team for close to nine months already. So you have quite a bit of time under your belt here. What has surprised you the most in your time at NephCure?

Deb: What has surprised me the most has been what this organization has accomplished with so few people. I look at all that we’re doing and have done, and I just can’t believe that this small team has accomplished it. That’s really been my biggest surprise. When I first started looking at this position and looking at the website, and all the different events and webinars, I thought to myself, “Oh this must be a big organization.” Then I realized that it’s really just a small group of passionate, intelligent folks working with great volunteers. That is really what has surprised me the most.

NephCure: What has been your favorite NephCure event so far?

Deb: That’s a hard one, because each event you go to where you meet patients and volunteers, you just love every one of them. I really enjoyed Countdown to a Cure NYC—how beautifully run it was and the folks who spoke and shared their stories. As far as a fundraising event, I really loved that. I also really loved the Los Angeles, CA Walk. They had a Lunch and Learn part of it that was really well done.

The other thing I loved was the NephCure Leadership Summit. But really, everything I’ve been to has been so meaningful and well-run, it’s hard to pick just one!

NephCure: What about the NephCure community inspires you?

Deb: Having been in this field for so long, at every nonprofit and every disease-related organization I’ve worked for, you meet the patients, and you meet the families, and you meet the volunteers, but I’m really not just saying this: I have never seen the level of passion among families and volunteers that I’ve seen here. Even just being on a committee phone call, they’ll spend time talking about the event, but then they’re all connecting on a personal level—because they’re all patients or parents and they enjoy having that time to connect together as well. I’ve been on hundreds of committee calls with other organizations, and even if there were patients on the calls, it was mainly about business. Here, you become a family. I’ve never experienced something like that at this level.

NephCure: What exciting plans do you have in mind for the future of fundraising at NephCure?

Deb: The most exciting plan we have is taking us to the next level. I’d like to see a future where everyone knows who NephCure is, and we grow our brand and our fundraising efforts and really become well-known. Everyone has worked so hard for 18 years to bring some great signature events and walks together, and now’s the time to bring a lot of these events to the next level and really shine a light on our brand.

NephCure: Can you think of any events that are run by charities that are not necessarily well-known, but the event itself becomes well-known and surpasses the awareness of the organization itself?

Deb: When I started with the National MS Society 23 years ago, I think there were about 400,000 people who had MS in the US at that time. So though it wasn’t necessarily a rare disease, it’s not something that millions of people had. They had started an event called the MS 150s—two-day bike tours of 150 miles each. I remember the finish line at those events, even if you were the last cyclist in, there was still the same amount of volunteers cheering you on, and a lot of them were patients. You’d see people in wheelchairs at the finish line. Every rest stop, every gathering point was integrated with with making the riders and volunteers feel great. They branded those events so well and became such experts in logistics, I’d say that 90% of the cyclists weren’t necessarily riding because they knew someone with MS. But because they made it such a wonderful experience and such a professionally-run ride, those events were able to bring MS into the public light a little bit more. Once the MS 150s started, they kind of catapulted awareness of the organization.

I think there’s an opportunity to make NephCure and Nephrotic Syndrome more well-known. And I’m excited to be here to help play a role in that.

It’s a pleasure and a privilege to welcome Deb to the NephCure family. If you’d like to speak with Deb, please feel free to leave a comment below, or send her an email at DPollock@NephCure.org. From all of us, welcome to the team, Deb!

Win a Trip to Advocacy Day!

NephCure Kidney International will be traveling to Capitol Hill in Washington, D.C. on June 19-20, 2018 to meet with members of Congress and advocate for research funding. This two-day event is a great way to connect with other families while helping us fulfill our mission.

This year, we invite you to enter a contest to win a trip to Advocacy Day! We will provide transportation and lodging for you and one guest of your choice. Additional rules and instructions for the contest can be found below. We will be choosing five winners—could you be one of them? Good luck!

Contest Rules

Create and submit either an essay (with your photo) or a video that answers the question “Why I Want to Attend Advocacy Day”

• Five winners will be chosen by a panel of judges and transportation and lodging expenses will be covered for 2 participants per winning entry
• Winners will be announced by May 4^th
• Already registered for Advocacy Day? You can still enter the contest! Just follow the same instructions below to enter to win.

Rules To Submit a Video:

• Videos should be 3 minutes or less. Please make sure to state your name in the video.
• Email your video here by April 23^rd. Then, send an email with your contact info to contest@nephcure.org.

Rules to Submit an Essay:

• Written essays should be 500 words or less and must include your photo
• Email your essay (and your photo) to contest@nephcure.org by April 23^rd

NephCure Advocacy Day 2018 is made possible in part by support from Mallinckrodt Pharmaceuticals and Retrophin, Inc.

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Additional Rules and Information (The Fine Print!)

NO PURCHASE REQUIRED TO ENTER OR WIN. VOID WHERE PROHIBITED.

INTRODUCTION. This Advocacy Travel Contest (the “Contest”) gives the contest winners the opportunity to win transportation to Washington, DC and lodging for 2 nights at the Holiday Inn, Washington, DC. The details of the prizes and how to enter the Contest are contained in these Official Rules.

TO ENTER. You can enter the Contest by submitting an essay with a photo or a video that answers the question “Why I Want to Attend Advocacy Day”

• Five winners will be chosen by a panel of judges and transportation and lodging expenses will be covered for 2 participants per winning entry

• Winners will be announced by May 4^th

• Already registered for Advocacy Day? You can still enter the contest!

• Videos should be 3 minutes or less. Email your video here by April 23^rd  

• Written essays should be 500 words or less and must include your photo. Email your essay (and your photo) to contest@nephcure.org by April 23^rd

NephCure Kidney International (“Sponsor”) is not responsible for lost, late, incomplete, illegible, or misdirected Contest entries, or for any error, human, technical or otherwise, which may occur in the processing of Contest entries. All entries become the exclusive property of Sponsor and will not be acknowledged or returned.

By submitting an entry, you permit Sponsor to use your photo, name, and entry (video or essay) in marketing materials, social media posts, or anywhere they deem appropriate.

TIMING. The Contest begins at 12:00 am Eastern Time on April 9^th, 2018 and ends at 11:59 pm Eastern Time on April 23^rd.

ELIGIBILITY. The Contest is open to all Nephrotic Syndrome patients and caregivers residing in the United States.

AGREEMENT TO OFFICIAL RULES. Participation in the Contest constitutes entrant’s full and unconditional agreement to and acceptance of these Official Rules and to be contacted by telephone and/or email.

SELECTION OF POTENTIAL WINNER. Five (5) Grand Prize winners will be determined by a panel of judges, chosen by NephCure staff, among all eligible entries received. Sponsor’s decisions as to all matters related to administration of the Contest and selection of winners are final. All potential winners must comply with all terms and conditions set forth in these Official Rules, and winning is contingent upon fulfilling all requirements. The potential winners from the drawing will be notified by email or telephone on or about May 4, 2018. If any of the winners cannot be contacted, an alternate entrant will be selected in his or her place at random from all eligible entries received.

PRIZE. The contest winners (“Contest Winner”) will each be awarded transportation and 1 room for 2 nights at the Holiday Inn, Washington, DC. Proof of payment (receipts) will be required.

The Prize is subject to the following material conditions and restrictions:

All other expenses and costs, not expressly listed above, including but not limited to food, mileage, incidentals, applicable taxes, are the Winners’ sole responsibility. No refunds or credit for changes are allowed. No transfer of the Prize is permitted.

GENERAL CONDITIONS.

By entering, participants release and hold harmless Sponsor, its subsidiaries, affiliates, directors, officers, employees and agents from any and all liability for any injuries, loss or damage of any kind arising from or in connection with the Contest or receipt or use and/or misuse of any prize.

Sponsor reserves the right to cancel or modify the Contest if fraud or any other factor impairs the integrity of the Contest as determined by Sponsor in its sole discretion.

SPONSOR
NephCure Kidney International
150 S. Warner Rd
Suite 402
King of Prussia, PA 19406
www.nephcure.org

Governor Cuomo Proclaims March 27th, 2018 as Nephrotic Syndrome Awareness Day in New York State

Governor Andrew M. Cuomo has proclaimed March 27, 2018 as Nephrotic Syndrome Awareness Day in New York State. NephCure is excited to partner with Assemblyman Edward P. Ra of the 19th district for this momentous occasion. Read the full resolution here.

NephCure volunteer Marlene Botta met Assemblyman Ra at the 2017 Long Island, New York NephCure Walk. Together, they formed a plan for New York to recognize the seriousness of Nephrotic Syndrome and the progress that NephCure Kidney International has made towards finding better treatments and a cure for this chronic kidney disease.

Marlene, mom to Jackie, 16, says, “The most exciting thing about going to Albany is the awareness. My main goal is to be able to say ‘Nephrotic Syndrome’ and have someone know it, like they know other diseases. They may not know it as intimately as we do, but they don’t have to say, ‘Nephrotic what?’

Marlene adds, “NephCure has been a Godsend! It has given Jackie a sense of not being alone in this, but with a network of other families that we can garner advice and support from. Jackie has been active with girls her age she met through NephCure on social media. They raise awareness and tell their stories. Jackie gave me the reason to fight the illness and NephCure gave me the platform. Helping NephCure raise awareness makes me feel less helpless.”

NephCure is thrilled to share this opportunity and what it means for families living with the effects of Nephrotic Syndrome. A heartfelt thank you to our volunteers in New York who made this day possible.

The Nephrotic Syndrome Research Network is revolutionizing the field of glomerular kidney disease research.

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Now in its ninth year, the benefits of laying the groundwork for the Nephrotic Syndrome Research Network (NEPTUNE) are beginning to come into fruition. As NephCure CEO Josh Tarnoff notes, “It’s hard to overstate NEPTUNE’s impact on our understanding of FSGS and related syndromes. For example, one of the data sets presented by NEPTUNE at ASN Kidney Week 2016 provided the much-needed evidence correlating proteinuria levels to survival. This no doubt assisted the FDA to evolve their guidelines to accept proteinuria as a new surrogate endpoint for certain new drug approvals. This opened up the field for many new pharmaceutical companies to invest in drugs to treat FSGS and other causes of Nephrotic Syndrome.

“Today, there are over 10 companies actively pursuing treatments for Nephrotic Syndrome diseases. NephCure is proud to support and partner with NEPTUNE and we’re grateful for how drastically NEPTUNE is changing the landscape for glomerular kidney disease.”

To learn more about the current goals of NEPTUNE and how the study has evolved over the years, we recently sat down with Matthias Kretzler, MD and Professor of Internal Medicine/Nephrology and Computational Medicine and Bioinformatics at the University of Michigan, who has been leading NEPTUNE since its inception.

NephCure: Since 2009, you have led the Nephrotic Syndrome Research Network (NEPTUNE). What is the purpose of NEPTUNE?

Dr. Kretzler: NEPTUNE set out to define what Nephrotic Syndrome diseases do to our patients in as a comprehensive of a way as possible.

In a detailed interview, patients answer questions about how their disease manifested and how it has affected them. In addition, we capture blood, urine, and most importantly, kidney biopsy tissue samples in a way that allows us to very deeply analyze them to understand how the kidneys are damaged. We are very grateful for our patients who donate all this time to the study.

NephCure: What insights has NEPTUNE data uncovered?

Dr. Kretzler: We are now starting to understand what specific disease mechanisms we are seeing in Nephrotic Syndrome. We can see that many of the mechanisms are shared, not only within Nephrotic Syndrome, but with other glomerular diseases as well. On the other hand, even inside the conventional disease groups like FSGS, Membranous Nephropathy, etc., the NEPTUNE data sets are able to see distinct subgroups of patients who share a specific mechanism.

We’ve accumulated follow-up data from more than 600 patients, so we now know how these various diseases change over time. The NEPTUNE research community is just starting to use advanced computational tools and machine learning approaches to define what the key trigger points are for disease initiation and progression.

The exciting part is that in many instances, these pathways and trigger points are molecules which have already been successfully targeted by pharmaceutical companies. Most of the time, these drugs have been developed for another disease, like rheumatoid arthritis or diabetes. The NEPTUNE profiling allows us to identify these drugs and reach out to the companies to alert them, “Are you aware that your drug for rheumatoid arthritis might also help patients with Nephrotic Syndrome?” We can then start to work with them to develop pilot studies to test if these drugs might be successful for our patients.

NephCure: I did not realize that NEPTUNE had identified actual molecular targets for potential treatments that already exist. That’s incredibly exciting!

Dr. Kretzler: Yes. NEPTUNE data sets are starting to allow for the molecular definition of diseases . There has been a lot of infrastructure that needed to be established to do this type of molecular analysis, but the tools developed by the network now have a strong track record to robustly deliver tissue-based molecular information.

This is very exciting. From a personal perspective, when I started my research in Dr. Wilhelm Kriz’s lab at the University of Heidelberg in 1987, I understood the scientific process as such: that we all contribute small steps to the scientific process, and what we do as scientists has an impact 5, 10, 20 years down the road towards developing treatments. This is now very different: If we get the right people together to align their forces behind a new treatment opportunity, we can now begin to move these things forward so quickly nowadays. It is stunning.

As always with scientific progress, it is also a high-risk activity. But the alternative—to just watch the kidneys fail and to watch our patients go towards dialysis and renal transplantation—is not acceptable. We are committing everything we have to try to develop this knowledge so that we can test these innovative treatment strategies and see which of them will work.

This is very new for our field. In oncology and rheumatology, this strategy towards drug development is already happening very successfully. We feel very strongly that for kidney disease, the time is now to test this approach.

NephCure: Before NEPTUNE was created, had something like this existed for kidney disease?

Dr. Kretzler: What’s different about NEPTUNE is that we can identify patients who have a specific disease-related molecule active at a given time inside their kidney. Using this patient data, we can hopefully fulfill the precision-medicine promise, at least to some extent: to provide the right drug, for the right patient, at the right time.

The next round of NEPTUNE will transition from studying the disease as it progresses to testing different drugs in patients with a better understanding of the molecular mechanisms. In support of this strategy, several pilot projects have already been initiated with funding from NephCure.

NephCure: Is NEPTUNE still actively recruiting?

Dr. Kretzler: NEPTUNE is still very actively recruiting. We currently have 625 patients enrolled, and we need 15 more to reach our second funding-cycle goal. We envision that in the next funding cycle, we will recruit patients under treatment to learn what different drugs do to the kidney in molecular terms.

NephCure: How many ancillary studies in total have used NEPTUNE resources?

Dr. Kretzler: So far, more than 90 studies have used NEPTUNE data and bio-samples to do their research around the world. Many of those ancillary studies have been funded by NephCure.

The NephCure-funded studies have been instrumental in energizing the scientific community. Through these studies, we have been able to attract many scientists who may not have otherwise studied glomerular diseases to this field.

From the beginning, the idea was to align very tightly with NephCure. NephCure has always been a key player and partner in developing NEPTUNE.

NephCure: It’s amazing when you consider how far NEPTUNE has pushed the field and the effort it must have taken, among so many different players, to bring it to fruition.

Dr. Kretzler: The philosophy is that NEPTUNE is an instrument to empower cutting-edge research for the entire community. To build this kind of research infrastructure, not a single scientist has the time, energy or resources to do it. It requires a community effort. That is what has been so remarkable with NEPTUNE: that among many different people with very diverse backgrounds in science, the community has pulled together and has committed, for 9 years now, to join efforts. Every one of us had to invest in building this network for the future, and it’s very exciting that we feel that that investment is starting to deliver: that we have an opportunity to bring novel ideas and therapeutic concepts to our patients.

Matthias Kretzler, MD, is the Warner-Lambert/Parke-Davis Professor of Internal Medicine/Nephrology and Computational Medicine and Bioinformatics at the University of Michigan. He received his medical training at the University of Heidelberg, Germany; Newcastle upon the Tyne in the UK; and at the University of Michigan. We are honored to have Dr. Kretzler as a member of the NephCure Scientific Advisory Board.

To learn more about NEPTUNE or how you can get involved, please visit the NEPTUNE website.