NephCure Kidney International ®
Saving Kidneys, Saving Lives
January 28, 2019 by Lauren Eva
November 1, 2018 by Lauren Eva
NEW YORK, Nov. 1, 2018 — NephCure Kidney International (NephCure) today announced that its 14th annual Countdown to a Cure Gala, to be held Thursday, November 8 at Pier Sixty, Chelsea Piers, nears its goal of raising one million dollars. Proceeds from the event will support new treatments for Focal Segmental Glomerulosclerosis (FSGS), IgA Nephropathy, and other diseases that cause primary Nephrotic Syndrome. FSGS is a rare and chronic kidney disease and the leading cause of kidney failure in children. IgA Nephropathy is a leading cause of chronic kidney disease worldwide, with approximately half of all individuals eventually developing kidney failure. Both FSGS and IgA Nephropathy can reoccur in up to 60% of kidney transplants. NephCure has devoted the past two decades towards investing in essential kidney disease research and is now in the final phases of bringing new therapies to patients.
Joshua Tarnoff, NephCure Chief Executive Officer notes, “Through nearly 20 years of NephCure-sponsored research, this relatively small organization has facilitated the creation of several promising drugs that are now in late-phase clinical trials. We have the rare opportunity to bring the first-ever approved treatments for FSGS, IgA Nephropathy, and Nephrotic Syndrome to our patients in the next several years.” Funds raised from this event will help launch a “Kidney Health Gateway,” an application that will quickly connect patients to trials, streamline research communication, and educate kidney doctors and their patients on available drug studies.
James C. McKenna, Chief Executive Officer and President of Hunter Roberts Construction Group (Hunter Roberts), will be honored at the event for his efforts towards finding a cure for Nephrotic Syndrome. McKenna is a civil engineer and talented builder with extensive experience in the Metropolitan New York area. Under McKenna’s exceptional leadership qualities and building skills, Hunter Roberts has quickly positioned itself to adapt to market trends and demands and is a leader in many markets. With McKenna at the helm, Hunter Roberts has completed unique and impactful projects – such as VIA 57 West, the MSK Laboratory Medicine Building, and Pier 57 – which have forever changed the New York landscape.
“It is an honor to be recognized at this important event,” said McKenna. “NephCure Kidney International has fought tirelessly for individuals affected by these terrible diseases. It makes me hopeful to see that their diligent research is beginning to bring new treatments and therapies to the market. I am proud of all the hard work that this organization has done. I look forward to continuing to work with NephCure until we cure these rare diseases.”
Joy and Noah Kerlin and family of Hamilton, New Jersey will also share their story. Noah is nine years old and was diagnosed with Nephrotic Syndrome two years ago. Due to his high-dose steroid regimen, he is now growing at a slower rate than his twin brother. Noah says, “I wish a cure could be found for Nephrotic Syndrome. I don’t like having to explain it to my friends, and I don’t like how worried my parents always are.”
Michael Levine, Event Chair, Vice President of NephCure Kidney International and owner of L&L Painting in Melville, New York, will also speak at the event. Levine’s teenage son Matthew has suffered from FSGS since he was three years old, and along with his family, Levine is a dedicated advocate for new and better treatments for the disease.
NephCure thanks all the sponsors whose support will help raise more than one million dollars this year. To date, the annual Countdown to a Cure gala has raised more than seven million dollars for NephCure to advance research into effective treatments for patients with Nephrotic Syndrome. This year’s event is made possible in part through support from gold sponsors Edward and Lisa Vaughan, Hunter Roberts Construction Group, and many others.
For tickets to the event, or to make a donation, please go to https://give.nephcure.org/CountdownNYC
Countdown to a Cure 2018 Honoree, James C. McKenna
Noah and Joy Kerlin will speak at the event. Noah is 9 years old and was diagnosed with Nephrotic Syndrome 2 years ago.
October 1, 2018 by Lauren Eva
We chatted recently with Dr. Campbell, a Principal Investigator for the PODOCYTE Study, to learn more about the trial, what it involves, and for which patients it might be best suited.
NephCure Kidney International: What is the PODOCYTE Study, and what is involved for patients who want to participate?
Dr. Kirk Campbell: The PODOCYTE Study is designed to test the efficacy [or effectiveness] of Acthar gel in primary Focal Segmental Glomerulosclerosis. To qualify for the study, patients need to be either resistant or intolerant to other treatments for FSGS. This study specifically targets patients whose FSGS is difficult to treat and who are at a higher risk for disease progression.
NephCure: Is this drug different from steroids or other commonly-prescribed treatments for FSGS?
Dr. Campbell: The study drug, Acthar gel, has been approved for the treatment of Nephrotic Syndrome for several decades, but the exact dose and duration of therapy, as well as the appropriate patient population within the spectrum of FSGS to administer the medication to, has not been that clear. This study seeks to get closer to answering those important questions.
The drug does not function exclusively like a steroid; there are steroid-like effects and anti-inflammatory effects, but one of the ways that this drug may work is by directly targeting specific melanocotin receptors on podocytes, the key target cell for injury in FSGS.
NephCure: Do you think it matters that researchers don’t know specifically why or why not this drug works?
Dr. Campbell: It’s a good question, but for every other drug we currently use for FSGS, we don’t completely understand why they work for this specific disease. All of the agents that we currently use are repurposed drugs from other clinical indications [i.e., created for use with other conditions], so this is a field that is really in need of innovation. But in the meantime, we have to make the best use of available, approved therapies, meaning drugs like this one and others, including cyclosporine, rituximab, and steroids, even if they weren’t approved specifically for FSGS.
NephCure: In this study, all the patients will receive the Acthar gel treatment. How does this work?
Dr. Campbell: All patients entering this study get the study drug, Acthar gel, upfront, and those who have a significant positive clinical response will have the option of entering an extended period where they would be randomized to the drug versus placebo. Those that don’t respond during the initial phase will be eligible for an extended, open-label enrollment where they will get the treatment. So all patients will have the opportunity to get the drug, and they’ll all be monitored closely and assessed for a clinical response. The information that we’ll get from this study will be very helpful and will benefit all patients with this disorder in the long run.
NephCure: How long do you wait for a response before moving a patient into the drug versus placebo stage?
Dr. Campbell: The initial part (6 months) is open label, and then, depending on the patient response, they would go to a second phase which would be drug versus placebo. That second phase is designed more to assess whether continuing treatment is necessary to maintain a remission, so only the patients who respond would potentially be in the second-phase placebo group.
In clinical practice some nephrologists use this drug for 6 months, and there are some that use it for 12 months. For patients who respond after 6 months of therapy, the question is: do you just stop treatment and monitor them, or should you continue the treatment to maintain that remission? This trial is designed to answer that very question—what to do with patients who respond after six months of treatment with Acthar for FSGS?
NephCure: I understand that Acthar gel is given as an injection—do you have to go in for the injection, or can you take it at home?
Dr. Campbell: Patients take it at home; they can administer it themselves. When the medication is being dispensed, they’ll receive a really nice handout with pictures and very clear instructions about administering the agent subcutaneously. The first dose is also administered at the study site under physician supervision.
NephCure: There are a lot of medical institutions in the greater New York City area. How do you partner with other nephrologists to spread the word about these clinical trial opportunities? For example, if there’s a patient who’s interested in participating who isn’t treated at Mount Sinai, is there a way for them to participate?
Dr. Campbell: Absolutely. In fact, the very first patient we enrolled in this study was not followed at Mount Sinai—she came from a colleague at a different institution who contacted me while exploring treatment options for steroid-resistant FSGS.
What we tell nephrologists and patients is that we are not seeking to disrupt the continuity of care and follow-up in well-established relationships between the patients and their nephrologists. We are only offering the opportunity to engage in studies that are well-controlled and can possibly offer a therapeutic benefit in patients who have treatment-resistant FSGS. We will see patients in their study visits, but outside of that, they maintain their relationship with their outpatient nephrology physician.
NephCure: Why is it important for minorities and people of color to participate in clinical research, and especially, the FSGS population?
Dr. Campbell: That’s an excellent question. First, participation in clinical trials has traditionally lagged among patients from underrepresented minority backgrounds. That goes for trials in nephrology as well as in many other fields within medicine.
It’s particularly important for this study because FSGS is far more prevalent in patients from underrepresented backgrounds.. [African Americans are four times as likely to develop FSGS than European Americans.] The prognosis can also be worse, with higher rates of progression towards end stage renal disease. So it is especially important for patients from minority backgrounds to be aware of studies like this and to take advantage of the enrollment and the close monitoring that’s involved.
NephCure: In your experience, what’s the biggest obstacle or fear that patients have about volunteering for clinical research, and how do you address or alleviate their concerns?
Dr. Campbell: I think patients often have a lot of questions. They want to be aware of all the different treatment options available and want to be comfortable that they’re not being swayed in a particular direction that could negatively impact their health. Patients also often want to use therapeutic options that have been time-tested, ones that have been proven to work with minimal side effects. Inherently in clinical studies, often-times the side effect profile of the drug hasn’t been clearly established, so patients can be a bit concerned about that.
Finally, a lot of them will say that they don’t want to be guinea pigs, that they don’t want to be experimented on, for fear again of negative outcomes. But patients get the closest monitoring when they’re in a trial: Every symptom and every new medication that they take must be clearly described and documented by the research team. Patients enrolled in clinical trials, because of the close scrutiny on them, end up getting excellent medical care and are watched much more closely than they would oftentimes be in routine clinical practice. Furthermore, there is an opportunity to try a therapy that can often work better than the traditional options. We try to reassure them with those realities.
NephCure: Final thoughts—what would you say to someone who’s on the fence about participating in this study?
Dr. Campbell: There are currently no clinically-approved drugs specific for FSGS. The drug being tested in this trial has been approved for Nephrotic Syndrome, and it is a therapeutic option that will be better understood by a study like this. For this disease, we don’t have a lot of options when patients don’t respond or don’t tolerate the first-line therapy. Participation in trials like this one can help us all understand how to better treat our FSGS patients.
We encourage you to learn more about the PODOCYTE Study and other studies that might be right for you at kidneyhealthgateway.com.
Kirk Campbell, MD, is an Associate Professor in the Division of Nephrology and the Vice Chair of Diversity and Inclusion at the Icahn School of Medicine at Mount Sinai. He is also the Director of the Nephrology Fellowship Program and an Ombudsperson for medical students. He is board certified in Nephrology.
Dr. Campbell is a graduate of the University of Connecticut School of Medicine and completed his residency training in Internal Medicine at Yale-New Haven Hospital and a clinical and research fellowship in Nephrology at The Mount Sinai Hospital. In addition to treating patients with renal disease, Dr. Campbell leads an NIH-funded research program focused on understanding the mechanism of podocyte injury in the progression of proteinuric kidney diseases.
He is a NephCure Young Investigator Awardee and a recipient of the Carl Gottschalk Research Scholar Grant from the American Society of Nephrology. Dr. Campbell is a member of the Medical Advisory Board of the National Kidney Foundation Serving Greater New York.
*Editor’s note: We are pleased to bring you this article from a guest blogger. The views expressed below are Mary’s own and do not necessarily represent the views of NephCure. Information posted on our site is not intended to be medical advice and should not be considered medical advice, nor is it intended to replace consultation with a qualified physician or other health care provider.
I have researched and learned so much navigating a chronic kidney disease for almost 20 years. Anyone on this journey knows that there is so much to know and so much still to learn! Read every article you can find and talk to your doctors—we have so much information at our fingertips. Be sure you are gathering information from reputable sites; NephCure and the National Kidney Foundation can help you find the latest studies and most credible sources. Your doctors know what’s tried-and-true as well as what’s brand new in the field.
Insurance companies will give you the chance to see doctors for second opinions—take advantage of this! Most of the drug therapies for FSGS and Nephrotic Syndrome are still in experimental stages. Be informed and know what you are taking; ask about the risks versus benefits for each new drug you start. Make informed decisions about your care, as there are many choices today. If you start the discussion with your doctors, you can give them the opportunity to collaborate—and that is to your benefit.
This is crucial in navigating the modern scope of medicine. If you don’t have time, or the task feels too daunting, appoint someone you know and trust. You can also seek an expert’s assistance. Whether it’s you or someone else, someone needs to be looking at your case holistically. In my experience with the way our medicine and insurance companies work together, there are specialists for each area of our care. While it is beneficial that you have someone who is most knowledgeable in each particular field, they usually only have time to go over your current symptoms, review labs, and make an assessment. We are not a heart, and a kidney and a brain… we are all of these, working together 24/7. It is imperative that someone oversees your whole case to get the whole picture.
Keep good notes in between appointments on what is going on throughout your body. In my own journey, this led me to study Homeopathy. It is a practice that looks at the whole person—the holistic view—and I am so grateful for this.
There are many alternative options today. In America, we rely heavily on doctors and insurance, but in most other countries, a lot of what we see as alternative choices are mainstream. Explore and see what adjunct therapies work well for your individual situation. There are Homeopathy, Acupuncture, Chiropractic care, Massage and other body working methods; the list goes on. What gives you the most healing? Think outside the box and stay open minded—keep learning.
For me personally, it was a combination of therapies that continued to change as my pathology shifted. Look at your alternative options and talk to your insurance company to see what they offer. Sometimes you may be required to pay out of pocket, which, when it means higher health, is worth it if you are able.
While you and your advocate are busy researching, remember to be kind to yourself. You may need to use rewards for taking good care of yourself. It can be whatever gives you peace. Taking a walk somewhere beautiful, allowing time for a restful nap, spending time with people you love… the list is endless!
Slow down and listen to what your body needs. The rush of our busy lives needs to slow down so we can listen and respond. Nobody, not your spouse, parent or advocate can do this for you. Make time for what brings you peace, make time to heal, and allow yourself to receive from loved ones—not only give.
The well-known quote by Hippocrates, “Let food be thy medicine…” is still valuable information today. We are what we eat. Eat thoughtfully and you will feel the difference. In renal disease, there are many values to know and adjust your diet accordingly. Check to see if your insurance will cover you to see a professional nutritionist; they have so many ideas and options to tailor as you wish. You can sometimes avoid multiple supplements by just eating the correct foods for your unique body. I’ve found this to be so helpful and makes a difference in my own quality of life.
Another lesson I’ve learned is to take control where I can. Take steps to manage your health, organize your surroundings, and stay positive—you are not a victim. Keep a list of questions as they arise so you are ready the next time you talk with your health professional. Filing or keeping track of your labs and medications as they change is helpful to look back on and often helps in looking at the whole story. If exercise is what you are missing, make a plan that suits you. It makes us feel weak when things are seemingly spiraling out of our control—do something! Join a support group, see how you may be able to help others—there is strength in numbers for sure! I find that the more I can be in control of, the less that is beyond me, and the more gratitude I feel for what is going well. Look at the positive and do what you can to see the good in each situation. With chronic illness, some days this is tough! Realize it, feel it, and then ask yourself if you can do more to help meet your goals. Sometimes there is not much more we can do… than practice gratitude.
We know it’s good for us, but not all of us love it. Find what feels good and works for you. When it comes to working out, it is not one-size-fits-all. I personally love yoga, and I feel it helps me the most. It has many health benefits and depending on what type you practice, there are many fitness levels to choose from. It is crucial to keep moving and in doing so, avoid other health issues that may complicate your kidney disease. If you can exercise outside—even better! We all need at least 20 minutes of sunshine a day and surprisingly, many find that difficult to achieve.
As you are gathering information, meeting doctors and making informed decisions, it can be very helpful to have a wise friend or confidante to talk things over with. I feel blessed with great support, but one person in particular who is very helpful is a cousin who has FSGS as well. Our doctors practice differently, have different protocols and we ourselves have very different symptoms in our disease. It is so enlightening when we discuss what we are going through, and nobody gets it like her! She is going through or has gone through similar situations: physically, mentally and spiritually. [Editor’s note: NephCure offers a peer support program called Patient Connections, where you can be connected with someone who has traveled a similar disease journey. Learn more here.]
Find that person that gets your highs and lows—we all have them. Perhaps you have your faith or a clergy member that can be of great support, I know for me personally it has been key. Share with your family and friends, mine have been my greatest support! I’m also fortunate to have a husband who is by me every step of the way. We all need someone that we can count on. It lightens the load when we share, and we can learn so much from others.
Finally, and in my opinion most importantly, become empowered. This sounds simplistic, but it has been very profound in my life. Every juncture takes some amount of thought, time, worry… each decision may be very different. Be kind and gentle with yourself; take the time you need to gather all the facts and come to an informed decision. Once you’ve exhausted all of your research: own it! Know that at this time, you have a choice on how to proceed, and you’ve made the best decision for you. This acceptance, no matter what it is, gives us the strength to move forward with confidence. I have found this subtle wisdom to be key in staying positive, while keeping focused and enjoying daily life.
These 10 nuggets can help add quality to our lives when health can be a challenge. Acceptance is the reward that allows us to live with freedom and joy.
Mary Farradj has lived with FSGS for the past 17 years and has been a homeopath for 5 of them. She recently started dialysis treatment and is waiting for a kidney transplant from her sister. To learn more from Mary, or if you have a topic you’d like Mary to explore in further articles, please feel free to ask a question in the comments below.
September 25, 2018 by Lauren Eva
August 1, 2018 by Lauren Eva
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.
Cheech, nearly 5 years old, on his first day of T-ball.
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.
Kara with Cheech today.
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.”
Kara (center) and supporters at one of their Bay Area NephCure Walks.
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!
Dylan Scott, hit country music singer with singles “My Girl” and “Hooked,” is headlining.
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.
San Jose Giants Muni Stadium, home to the inaugural Silicon Valley Pig Jig to be held Oct. 6.
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.
Kara and family have been dedicated members of the NephCure community for many years.
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.
Cheech at our 2015 Countdown to a Cure Gala. He and his family were our featured Fund a Cure Champions that year.
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
June 22, 2018 by Lauren Eva
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:
June 15, 2018 by Lauren Eva
June 1, 2018 by Lauren Eva
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.
Deb loves being Nana to FIVE grandchildren!
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.
Deb at the Los Angeles NephCure Walk this year with fellow staff member Lisa Rottler Albin—and some Minions, too!
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.
Deb says, “Go Flyers!”
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!
FSGS, or focal segmental glomerulosclerosis, is a diagnosis that is made based on kidney biopsy often after it is noted that a person has high amounts of protein in the urine, high cholesterol, and/or swelling. Hypertension and progressive kidney dysfunction can also be a part of the disease. FSGS is really a descriptive term where scarring is found in segmental portions of the some of the filtering units of the kidney, also known as “glomeruli”. Because it is a descriptive term, there are actually many different underlying causes, including immunologic (essentially “autoimmune” in nature, often responsive to medications that suppress the immune system), genetic, viral (such as HIV), obesity, severe prematurity with intrauterine growth restriction, and even related to scarring from other primary disorders, such as lupus. Because there is such a wide range of causes of FSGS, there are also varying approaches to treatment.
Often, medications such as prednisone or other steroids are first-line therapies. It is important to take these medications as prescribed and not miss doses because these medications can affect the normal functioning of the adrenal glands. Therefore, a person can become quite sick if doses are missed without their doctor knowing. Not taking medications as prescribed may also decrease their efficacy. Calcineurin inhibitors (tacrolimus and cyclosporine), are also commonly prescribed. These medications are time-sensitive and must be taken every 12 hours apart to achieve appropriate levels and not risk toxicity. These medications also have many significant interactions with food you may eat or other medications you may take. Other immunosuppressive therapies have been tried, including mycophenolate (CellCept), rituximab, plasmapheresis, LDL pheresis, and abatacept, each with its own side-effect profile. Being your own advocate and discussing options in detail with your provider is important to make sure you understand the medications you are taking, how to take them, and what the risks are. Without this knowledge, you may not be getting the medications’ full benefit and be putting yourself at unnecessary risk.
Non-immunosuppressive interventions are also important. ACE inhibitors (such as lisinopril or enalapril) or ARBs (such as losartan) are blood pressure medications that are also useful to help reduce the protein in the urine by preferentially decreasing pressure inside the filtering units of the kidneys. Statins, which are high cholesterol medications, can also be very helpful. Water pills such as Lasix/furosemide may also be necessary to control swelling.
Good diet and exercise are also important parts of the equation. Restricting sodium in the diet helps reduce the amount of diuretic that may be needed and thus, limit side effects. A low-sodium diet can also help with hypertension. Protein is not usually restricted if someone is spilling significant amounts of protein in the urine. Controlling obesity also limits the stress on the kidneys and can slow progression of the FSGS. Certainly, avoiding smoking is critical to the lifespan of any kidney.
Having an FSGS diagnosis can profoundly impact a person’s life. However, it is important to know that you have the power to make a difference in your health. It is important to work with your providers to come up with a healthcare plan that works individually for you. Find a team that you trust and communicate well with. Be involved and be your own advocate. Lastly, find a support group to help you through this. Treating your mental health is just as important as treating your physical health. You are not alone and you can do this!
Dr. Mindy Banks is board-certified in pediatrics, internal medicine, adult nephrology and pediatric nephrology. Her combined internal medicine/pediatrics training was at Nationwide Children’s Hospital in Columbus, Ohio. She continued her medical training in the Midwest with fellowship at Northwestern University Hospital and Lurie Children’s Hospital in Chicago. Her medical practice focuses on children and young adults with the whole spectrum of kidney diseases ranging from frequent urinary tract infections to hypertension, nephrotic syndrome, dialysis and post kidney transplant care. She lives in Denver, Colorado with her husband and 3 boys. Besides nephrology, her life is spent either with sticky fingers from crafting or baking or sitting sidelines at a soccer game.
Having been in clinical research for 30 years as well as having been in practice in nephrology, I have seen as new medicines have come to make a huge difference in patients’ lives. Unfortunately, few of those medicines have benefited kidney disease. When I advise a patient on how best to manage their disease, I think about how I advise my own parents.
The first is to make sure you read and know as much about the disease as you can. You have to do your homework. But you have to be careful as there is a lot of misinformation out there, especially on the internet. I would turn to sources such as NephCure Kidney International or other patient advocacy organizations as they provide extremely important and correct information to patients. The patient with the disease is always first in their minds. Do not be afraid to ask your doctor questions! A good doctor always takes the time to speak to their patients, no matter how busy they are. Write down your questions and take the list with you when you see your doctor. If the doctor ignores your questions or dismisses them, I would look for another doctor.
The second thing is to ensure that you follow the instructions that your doctor recommends. All kidney diseases, regardless of cause, will get worse if your blood pressure is abnormally high, for example. Taking your blood pressure as prescribed and watching your diet is extremely important for patients with kidney disease and Nephrotic Syndrome.
Finally, it is important to ask your doctor about clinical trials that may be ongoing or are about to start for new medicines that could benefit your kidney disease. Many of the current medicines used in kidney disease have severe side effects, like prednisone. Do not assume that your doctor knows what new medicines may be available for use in a clinical trial. NephCure and some, but not all, disease advocacy websites may list the drugs, the studies and the nephrology practices in the country where trials are being conducted. The only way that old, poorly effective and very risky drugs can be replaced with good ones that truly make a difference in the disease is by studying them in clinical trials. There are now more drugs than ever being considered for the treatment of FSGS and other kidney diseases. I would encourage patients to think about exploring these opportunities. Your physician can guide you on this journey as well. Be inquisitive, as it can make a difference in your life.
Diane Jorkasky, MD, is Executive Vice President, Chief Medical Officer, and Head of Development at Complexa Inc. (Berwyn, PA), a patient-focused, science-driven, clinical stage biopharmaceutical company developing a novel class of compounds, Nitrated Fatty-Acids, for the safe and effective treatment of debilitating fibrotic and inflammatory diseases. She has over 30 years of experience in the pharmaceutical industry across all phases of clinical research and development for a broad range of drugs in multiple therapeutic areas. Diane currently serves on the Board of Directors for OSE Immunotherapeutics (Paris, France), the Scientific Advisory Boards of Sigilon (Cambridge, MA) and Alzheon (Framingham, MA) and the Strategic Advisory Board of BioMotiv. She is also a member of the faculty at the University of California at San Francisco and Uniformed Service of Health Sciences Medical Schools. She serves on the executive committee of the American Course on Drug Development and Regulatory Science. Diane has published over 100 peer-reviewed articles and teaches internationally on drug development. She received her MD from the University of Pennsylvania, where she also completed her nephrology fellowship. In 2016, she was awarded the Elizabeth Kirk Rose Woman in Medicine Award by the University of Pennsylvania. She holds board certifications in clinical pharmacology, nephrology and internal medicine. Diane obtained her BA in Chemistry from the College of Wooster, where she was honored with the Distinguished Graduate award in 2013.
FSGS and Minimal Change patients from all over the world consult with our naturopathic clinic, Holistic Kidney. Many of them are looking for alternatives to medications or as adjunct therapy for when medications help somewhat but they are still not able to reach full remission. Naturopathic doctors are the only healthcare professionals with broad training in both botanical medicine and pharmacology. I can tell if a particular herb would work well with a patient’s current prescription medications. I don’t encourage patients to abruptly stop any medication, but over time, we may be able to reduce the need for some medications.
We recommend plant-based supplements and dietary changes to reduce kidney inflammation and proteinuria. We also address long term cardiovascular health and bone density issues for patients. The connection between Nephrotic Syndrome and low-thyroid hormones is often not talked about, even though many kidney patients report feeling chronically cold. This is something we address. We also consider chronic insomnia, which is very common with Nephrotic Syndrome. By looking at Nephrotic Syndrome from different perspectives, we are able to use natural medicine to reduce kidney stress and improve kidney function.
Dr. Jenna Henderson’s practice, Holistic Kidney, is dedicated to the unique needs of renal patients with an international clientele and patients on 6 continents. A kidney patient herself for over 25 years, she has experienced all stages of kidney disease firsthand. She is a graduate of the University of Bridgeport. Dr. Henderson has had several articles on kidney health published in Townsend Letter, Natural Medicine Journal, and NDNR. She has lectured extensively across the U.S. to naturopathic doctors, kidney patients and kidney professionals, and co-hosted the radio show Improve Your Kidney Health.
Dr. Henderson seeks to bridge the gap between mainstream nephrology and natural medicine. In her practice, she helps patients sort through often conflicting information to understand what is appropriate for their individual needs and stage of kidney function. She is often able to help patients delay the need for dialysis. For those already in kidney failure, she helps patients find optimal wellness with dialysis or a transplant. She holds a naturopathic license in the state of CT and has recently relocated to New Paltz, NY. For more information, visit www.holistic-kidney.com.
150 S. Warner Road
King of Prussia, PA 19406
1.866 NephCure (637-4287)
© Copyright 2021 NephCure Kidney International, Inc. All rights reserved worldwide. NephCure Kidney International, and the logo, are federally registered trademarks of NephCure Kidney International, Inc.
Your gift will help us get new and better treatments into the hands of the rare kidney disease patients & families who need them most.