Geeta Moreau first went into kidney failure in 2005—an extremely tough situation to handle for anyone, but especially for an independent and successful woman like herself. Throughout her triumphs and struggles, Geeta has remained true to her core of positivity and optimism. We asked Geeta to share her experiences and inspirational story to help others who may find themselves in similar situations.

If there ever was a time to look within for hope and sheer will to live, it’s when I relapsed with Focal Segmental Glomerulosclerosis (FSGS) last summer. It was May 1, 2018, two weeks before Mother’s Day. I feared a relapse may happen considering I was recovering from a divorce and rebuilding a new chapter in me and my son’s life. And there it was fear realized—I thought about who would take care of my son.

It was different the first time I went through kidney issues, but one symptom was the same: the edema. The sudden swelling to indicate the something was happening, 30 pounds of edema.

I went through stage four kidney failure in September 2005. I lost all independence to care for myself. My lesson to learn and allow loved ones to care for me was humbling and uncomfortable at times. I didn’t know how to handle all the side effects from my various medications. I also didn’t socialize much because I was so acute and didn’t want people to see me sick. I wanted to be remembered a certain way.

This time around I’m working hard, taking care of my son and myself, I’m working toward a better life. Although FSGS is not as acute as kidney failure, other factors come to mind: parenting, career, but most of all health. I’m a single mother and want to see my son grow up. I’m continuing to work in my field through my chronic illness, although it is a struggle at certain times.

Another thing I encountered was a sudden onset of 30 pounds of edema. The physical weight was also a metaphor for the weight of the stress I was feeling. I had no idea how or what I was going to do, but I knew it was going to be looking forward to things in the future to stay alive. It was survival mode. I had read somewhere that when you’re sick make future plans, it helps the mind to look forward to something and betters your chance for survival.

The most cathartic part of this process is I’m starting to share my story in hopes of helping others gain hope and resilience to fight for their own health. It’s difficult to share my personal experience of living with FSGS. I’ve always been a friendly person, but remain fiercely private at the same time.

Anything I could do to keep a glimpse of optimism, I do it. Meditation, drawing, practicing guitar and music. My son’s a great reminder of the art of play and playing in the present is such a healer. I’m reminded daily the possibilities of the impossible.

I also know how to better manage my own self-care, how to handle the side effects from the medications, but back in 2005 I was in a much more acute state. I went into a full remission in 2007/2008. I was on high doses of prednisone, cyclosporine, and other medications to keep my body systems in check as everything is affected when my kidneys were not functioning correctly. To say it’s difficult physically and mentally is an understatement.

Life does have its consequences. The medications that saved my kidneys affected my bones. In 2009, I was diagnosed with avascular necrosis of the hip, bilateral in 2010. Bone death. I walked with a cane for two years. Lived with chronic pain and limited mobility. In 2011, I got married, honeymooned and had hip replacement surgery. Then it was ‘getting my health back’ mode. I wanted to get off the pain medications to try to have a baby. I was hopeful yet realistic. I did get pregnant and had a miscarriage in the 9th week in 2013. Though I had read it was common for that to occur, it was a sad time that I worked through. I kept thinking that my body is receptive to conceiving. Within two months I was pregnant again, and I had a healthy pregnancy.

In November 2014, I delivered a beautiful baby boy naturally with a hip replacement. I thought a c-section was inevitable, but my perinatologist advised me to be in good shape, pay attention to my body and well-being. Motherhood is the best thing that ever happened to me; it reminds me every day how life is possible.

I did have a ten-year remission after all. These recent days, my kidneys are responding to the medications within nine months. I have not been on dialysis or had a transplant. I’ve always felt fortunate to be able to tackle this chronic disease with medications. Acupuncture helps me tremendously, balancing my mind and body.

Optimism has always been in my nature, even before I fell ill. But when I got sick and lost all independence to work and care for myself, optimism became a practice. It was a matter of survival, life or death.

My tendency is to look forward. I don’t ask why this chronic condition is happening, rather I channel the energy to eat right, exercise, and work toward gaining kidney health. I do what I can control, and the rest I keep the faith and spirit of positivity close to my heart.  It’s not easy, but it’s a will to not only survive, but to thrive. I hope to be in a full remission again. I remain optimistic because I’m grateful to be alive.

– Geeta Moreau

(KING OF PRUSSIA, PA – MARCH 8, 2019) NephCure Kidney International (NephCure) is proud to announce the addition of three new members to its Scientific Advisory Board (SAB). Joining the distinguished SAB are Laura Barisoni, MD; Alessia Fornoni, MD, PhD; and Marva Moxey-Mims, MD.

“Our Scientific Advisory Board is made up of leading basic science and translational researchers, all of whom have made great strides in pushing glomerular disease research forward. We are thrilled to welcome Drs. Barisoni, Fornoni and Moxey-Mims to this esteemed group,” Irving Smokler, PhD, Board President of NephCure announced.

NephCure’s CEO, Joshua Tarnoff, added, “All three of our newest Scientific Advisory Board members bring diverse expertise and experiences that embody the spirit of our NephCure community. We are very fortunate to welcome them to our team, as 2019 is a pivotal year for clinical research and bringing forward new and effective treatments.”

The chairman of NephCure’s SAB, Martin Pollack, MD, also congratulated and welcomed the new members, “We are thrilled to welcome Drs. Fornoni, Barisoni, and Moxey-Mims to the Scientific Advisory Board.  All three are outstanding and dedicated physician-investigators who are committed to improving our ability to care for individuals with glomerular disease.”

Laura Barisoni, MD

Laura Barisoni, MD is currently a Professor of Pathology and Medicine at Duke University Medical School. She is an accomplished diagnostic pathologist and an internationally recognized expert in the field of digital nephropathology and the use of digital image recognition as a diagnostic tool, particularly for glomerular diseases. Dr. Barisoni is the current President of the Renal Pathology Society, where she previously served for four years on the Board of Directors.

Actively involved in NIH-sponsored grants on podocytopathies and clinical trials on Nephrotic Syndrome and Fabry’s disease, Dr. Barisoni also has remarkable teaching experience at numerous national and international courses in renal pathology.

Alessia Fornoni, MD, PhD

Alessia Fornoni, MD, PhD is a tenured Professor of Medicine and Molecular and Cellular Pharmacology at the University of Miami Miller School of Medicine. She is also the Chief of the Katz Family Division of Nephrology and Hypertension and serves as Director and Chair of the Peggy and Harold Katz Drug Discovery Center. Dr. Fornoni’s lab was the first to report an important role of sphingolipids and cholesterol in the modulation of podocyte function in focal segmental glomerulosclerosis.

Her internationally recognized research findings, which are now being translated into humans with novel therapeutic applications, have challenged existing paradigms. Dr. Fornoni’s vision is one that brings industry, investors and not-for-profit organizations around the table with the intent to match science with innovation and patients’ motivation to find a cure for kidney diseases.

Marva Moxey-Mims, MD

Marva Moxey-Mims, MD is a Professor of Pediatrics at the George Washington School of Medicine and the Chief of the Division of Nephrology at Children’s National Health System in Washington, DC, where her focus is on clinical research to improve the care of children with kidney disease. She was most recently at the National Institute of Diabetes, and Digestive, and Kidney Diseases at the National Institutes of Health in Bethesda, MD, where she served as deputy director for clinical science in the Division of Kidney, Urologic and Hematologic Diseases.

Two of the studies Dr. Moxey-Mims initiated are the ongoing Chronic Kidney Disease in Children (CKiD) study, the largest study of pediatric chronic kidney disease ever conducted in North America, and the Randomized Intervention for Children with Vesicoureteral Reflux (RIVUR) trial, the primary results of which were published in the New England Journal of Medicine.

NephCure Kidney International’s Scientific Advisory Board includes:

• Gerald Appel, MD, PhD
• Daniel C. Cattran, MD
• Friedhelm Hildebrandt, MD
• Lawrence B. Holzman, MD
• Frederick Kaskel, MD, PhD
• Jeffrey B. Kopp, MD
• Matthias Kretzler, MD
• Peter Mundel, MD
• Martin R. Pollak, MD
• Jochen Reiser, MD, PhD
• Andrey S. Shaw, MD
• Karl Tryggvason, MD, PhD
• Roger Wiggins, MB, BChir
• *Michelle P. Winn, MD Posthumous Emeritus

NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Specifically, NephCure is focused on glomerular diseases such as: FSGS, IgA Nephropathy, Minimal Change Disease, Membranous Nephropathy, C3 Glomerulopathy, and Membranoproliferative Glomerulonephritis. NephCure is headquartered in King of Prussia, Pennsylvania. For more information about the organization, visit NephCure.org or call 1-866-637-4287.

NephCure Kidney International recently sat down with Dr. Ahmed Awad, a nephrologist in Kansas City, Missouri, to learn more about his company, Clinical Research Consultants, and find out why he believes clinical trial participation is so important. He also delves deeper into the DUPLEX study (specifically for FSGS patients), breaking down what participants can expect, how to get involved, and what the near future may hold for those diagnosed with Nephrotic Syndrome.

Dr. Ahmed Awad, CEO and Principal Investigator at Clinical Research Consultants

NephCure Kidney International: You founded a company, Clinical Research Consultants, specifically to help support clinical research. Why is that so important to you?

Dr. Awad: I started back in 2008-2009 when there were more normal drugs coming on the market to specifically treat kidney disease. Up until about 2010, the majority of our treatment had not been specific to a particular disease. But I thought, “In the next 5-7 years, we will have more medications coming on the market that can treat a specific glomerular disease or a specific kidney disease, for a specific patient, rather than just giving them a general treatment with prednisone.” We did not have enough armaments in our hands to treat kidney disease, but I knew the future was coming, and that’s why I wanted to be more involved in clinical research.

NephCure: Why is it important for patients to participate in clinical research, or to take control of their disease early in their disease journey?

Dr. Awad: I do believe patients who participate in clinical trials get better care than when they only see their primary care physician or their regular nephrologist. In the real world, out there in the clinic, patients would typically be seen once every 3-4 months, and there’s not much education—labs can vary from one month to another. Whereas when a patient participates in clinical research, they would be seen by the specialist and study coordinator more frequently: between once a week to once a month. And the patient gets more in-tune with the disease process because they’re getting this reinforcement of seeing the study coordinator and seeing the study physician very frequently. They seem to be more in tune with their disease, and can learn more about living with their disease. Which means, in my experience, they seem to really do much better in the clinical trial than when they just see their specialist once every 3-4 months.

NephCure: What’s the biggest obstacle patients face when enrolling in a clinical trial?

Dr. Awad: Awareness. I think patients do not know there are clinical trials for these different types of kidney disease, and also, the physician may not be offering them. The physician may not even know that there are so many clinical trials out there to help with chronic kidney disease.

NephCure: One of the studies you’re involved in enrolling patients in is the DUPLEX study for FSGS patients. What’s unique about this trial?

Dr. Awad: It has a unique mechanism of action. It is a dual treatment—it not only works as an angiotensin receptor blockade, but also is an antecedent. It inhibits the antecedent from getting vasoconstricted, meaning clamping the blood vessels. So it has a dual mechanism of action in reducing protein in the urine, and we know, historically, that reduction of protein in the urine delays the progression to end stage renal disease. That’s the beauty about the DUPLEX trial with Sparsentan. The dual mechanism of action is not only an angiotensin receptor blockade, but it also has an antecedent activity.

NephCure: So this is a drug that could potentially help all FSGS patients, whether they’re steroid-resistant, steroid-dependent, or not responsive to other treatments?

Dr. Awad: Definitely, because it has the potential. We saw in the Phase II clinical trial, called the DUET study, that this drug, regardless of their FSGS’s resistance to steroids or not, showed a reduction of proteinuria. That’s why there’s now a Phase III clinical trial for this drug.

NephCure: What’s involved for patients that want to participate in this study?

Dr. Awad: It is an oral tablet. The trial is for about 2 years. The patient will visit us once every two weeks for the first two months, then once every four weeks for the next few months, and then after that, once every 3 months. Every time they come in, we check their bloodwork, and we check the amount of protein in their urine.

NephCure: What would you say to someone who’s on the fence about participating in a trial, or in this trial specifically?

Dr. Awad: Our motto here at Clinical Research Consultants is “Helping you, helping others.” I always tell my patients, if it wasn’t for people like you who participate in these kinds of clinical trials, we wouldn’t have the medication we are giving you right now, or one that has been approved by the FDA. Any patient who participates in a clinical trial is contributing to society by helping others, as well as themselves.

NephCure: Do you have any final thoughts you’d like to add?

Dr. Awad: I think we’re on the verge of a true treatment for glomerular diseases, more specifically the different types of kidney disease. It is not going to be a general treatment for all of them, it’s going to be a specific treatment for a specific disease. We know now the pathophysiology, the specific pathway in the development of this, and we even know what gene that can turn on or turn off the process of kidney disease. And there are so many medications, so many clinical trials undergoing to treat these different types of kidney disease. We will have treatments in the next 3-5 for all types of kidney disease.

Meet Meredith Wilson, the woman behind the elaborate NephCure Kidney International events taking place across the entire country. Her meticulous planning and detail-oriented eye has made for many successful galas, walks, conferences, and more. This Disney-obsessed National Events Manager is celebrating her 5th anniversary with NephCure this year. We sit down with Meredith to learn more about her crucial role at NephCure and find out what she’s planning in the near future.

NephCure: Can you believe you’ve been at NephCure Kidney International for 5 years?

Meredith Wilson: My first day at NephCure was May 27, 2014, I started as an intern and never thought I’d still be working here almost 5 years later.

NC: How did you originally get involved with NephCure?

MW: I was unsure what direction I wanted to take after graduating college and thought it’d be interesting to try out something completely new. A friend of mine was working for NephCure at the time and mentioned to me they were looking for a summer intern. The experience was great, and I was curious to see how a nonprofit is run.

NC: What different roles have you held during your time at the organization?

MW: I’ve had many different roles during my time here at NephCure. Like I mentioned earlier, I started as a Special Events Intern assisting with our golf outings and galas. I then became a Regional Walks Manager on both the East and West coasts. After that, I stepped into the Regional Events Manager role, planning all of our East Coast events. And finally, I was promoted to the National Events Manager—which is my current title. That role has shifted a lot over the past few years as we continue to add more and more new NephCure events across the country. I’ve taken on roles from other departments when needed, like Operations and Conference Management, in addition to coordinating all of the administrative and logistical tasks for every fundraising event.

NC: Which one has been your favorite?

MW: My favorite role has been planning the annual NephCure Leadership Summit where all our top volunteer leaders come together to discuss their journeys, share their tips, and learn about NephCure’s new initiatives. It’s a great event, and I love planning it because it involves input from every department—the organization works as a whole to put together a fun and educational weekend for our volunteers.

NC: What do you like most about working for NephCure?

MW: There’s always something new to plan. I love starting a new project and then watching it come to life from beginning to end. It’s very rewarding. We have a great staff and it’s been a pleasure working alongside my colleagues, especially the ones who have been here as long as I have and have watched the organization grow and adapt to changes in the industry as well as the work space.

NC: What is it like to plan such big events like a Countdown to a Cure gala? How much work really goes into it all?

MW: Endless amounts of work! Every year I always say I wish I had more time! Countdown to a Cure, in particular, is a massive event that requires so many moving parts behind the scenes to ensure a successful experience for each of the attendees.

NC: What things are you most excited for in NephCure’s future?

MW: I think I’m most excited about the magnitude of new events we have coming up this year. In total, NephCure will have 4 brand new events in 2019! This is most new events we’ve ever had at this level. And none of it would be possible without the dedicated, hard working volunteers that have a passion for helping NephCure. They always bring new ideas to the table and it’s so fascinating to see their hard work come to life!

NC: When you’re not at work, what are you most likely doing?

MW: I might be at Disney World! I’ve been four times in the past year. I love all things Disney, especially Tinkerbell! Outside of that, I’ve recently joined the Young Professional’s Board for Uplift Center for Grieving Children. We are volunteers who promote the Center’s mission, run fundraising events, and assist the center in any way to ease their workload. It’s a wonderful opportunity to give back through another organization and network with local professionals.

Road to Rituximab: Matthew Englefield’s New Treatment Experience

Matthew Englefield has been living with Nephrotic Syndrome—Minimal Change Disease for the past 6 years. He maintains a page on Facebook to help offer support to other children and adults who live with this condition, called Matthew and Nephrotic Syndrome. We asked Matthew if he could share his experience of trying Rituximab as a treatment option for his Nephrotic Syndrome. A recent study has shown that Rituximab is more effective than Tacrolimus in maintaining disease remission and may be considered as first-line corticosteroid-sparing therapy for children with steroid-dependent Nephrotic Syndrome.

Hello, my name is Matthew Englefield. I am 18 years old, and I live in England, UK. I was diagnosed with Nephrotic Syndrome in 2012 and have been on various medications since then. These varied from trying long-term steroid treatment, levamisole, tacrolimus, MMF (cellcept) and a very hard choice—Rituximab. I had a kidney biopsy back in November 2017 to see what long-term effects tacrolimus had on my kidneys. It was then that I was told I have a form of Nephrotic Syndrome called Minimal Change Disease (MCD).

At the start of 2018, I met with my consultant to discuss the next potential form of treatment: Rituximab. This is a newer form of treatment that’s been used to treat Nephrotic Syndrome for roughly the past 10 years. I was very scared and drastically worried about trying out the medication, but I had one last option to try before Rituximab. That was to go onto MMF (cellcept) to see if it could maintain my remission. Sadly, after being on it for a month, it didn’t work. I was spiraling into another relapse, with protein present within my urine. I was left with no other choice but to go ahead with Rituximab.

At this point I was petrified. I didn’t know what to do as there were no other forms of medication to try. Learning about the side effects of Rituximab left me feeling shocked. It was a very big risk I had to take—in fact, everything has been a risk since being diagnosed with Nephrotic Syndrome. I decided to go ahead with the treatment because I was hoping and believing that Rituximab could make me medication-free and maintain remission. I had to be in remission for a good couple of months to be able to get the treatment, otherwise I was at risk for something to go wrong during the procedure.

For support during this tough time, I reached out to a family in Canada who I have become friends with over social media and asked them more about my last option of treatment. Their son Brock had recently gone through Rituximab. I was able to learn more about his experience and ask him questions about the procedure. This reassured me that I had made a positive decision in choosing my last form of treatment to help maintain remission.

I was given a date for my Rituximab infusion in August, but I was not looking forward to it at all. I was very worried about trying the new form of treatment and I was constantly questioning myself, “What if the procedure went wrong?” or “What if I had any allergic reactions while having the treatment?” I had spoken to a lot of people who have Nephrotic Syndrome and I was asking them for advice either personally or on my Facebook page (which is dedicated to help parents and individuals who suffer from Nephrotic Syndrome).

Finally, the day came to have my treatment. I got into the hospital, had my cannula (IV) inserted into a vein and had to wait until midday before I could have the infusion. I was not allowed to eat anything in the morning, but I could have fluids. If the procedure went well, it would take around 4-6 hours. At that point, all I could do was pray that it would. Before the Rituximab infusion, I had to have an antihistamine infusion to prevent any reactions taking place. Finally, after waiting a very long time the infusion began! I fell asleep during the infusion, as I was exhausted from waking up early in the morning, in addition to receiving the medication.

I began to feel very hot and had developed a sore throat at the start of the infusion. This quickly vanished as the procedure carried on. Even during the infusion, I was quite worried that it would go wrong. If I had a reaction, the infusion would have to stop. Luckily, this didn’t happen and after every hour they increased the flow rate of the medication, which made the duration quicker. I was able to do things while the infusion was taking place, including using the restroom and have a walk around. I was very glad I could do this, because sitting down for a long length of time can be very boring! The nurses were very kind and made sure I was entertained so that I could have some form of distraction to make the time go quicker.

After four very long hours I was glad to see that the infusion had come to an end! I had to wait an extra hour after it had finished to make sure I didn’t have any reactions or sudden side effects after the infusion had taken place. After a couple of days of having Rituximab, I lost a lot of energy. I found myself falling asleep a lot, which made me feel like an elderly man dozing off in the chair! But, after a couple of weeks of continuously falling asleep at very strange times during the day, I started to feel better.

Sophie, a friend of mine, was also going through the same process I had been through and was waiting for her Rituximab treatment. She was finding it a very distressing time, just like me and was contemplating whether she had made the right choice of treatment. As I had gone through the treatment before her, she asked me a lot of questions about my experience with Rituximab and what happened during the procedure. It felt great that I was able to help and reassure Sophie, who also suffers from Nephrotic Syndrome, while she was waiting for her date for her Rituximab infusion.

Rituximab can be a very scary experience, and I had second thoughts of having the treatment. But at the end of the day, I am glad I took the risk of going ahead with Rituximab for the hope of long-term remission.

It has been three months since I had my Rituximab infusion, and I do not feel as tired as I once did. I am able to maintain daily tasks that we all have to tackle within our lives. I feel great! I have gone back to Judo, which I had to stop when waiting for my biopsy, and can now do more physical activity than I could previously. I am now waiting for my appointment with my consultant which is coming up within the next few weeks, and because I have been in remission ever since having Rituximab, I am hoping to be taken off steroids (prednisolone). I’ve been on steroids for over a year and once I get off them I will be fully medication free—something I have not been since my diagnosis back in 2012.

I want to thank you all for reading my story and experience with Rituximab. I hope my story eases your anxiety towards trying Rituximab, for the hope of maintaining remission.

-Matthew Englefield