NephCure Kidney International ®

Saving Kidneys, Saving Lives

Nephrotic Syndrome and COVID-19 – Updated Guidelines

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While the past few months have brought a great deal of confusion, pain, and discomfort to the entire world, we understand the thirst for information is just as prevalent now as it was at the start of the COVID-19 pandemic.

As new research is coming out and guidelines are seemingly changing every day, NephCure is here to help you and other patients with protein-spilling kidney diseases navigate the unknown. We continue to advise you to consult with your physician to design your own protection plan, as every patient’s situation is unique.

No matter your age, if you have chronic kidney disease at any stage or have received an organ transplant, the CDC has clearly outlined and our NephCure Specialists agree that you are at an increased risk for complications from the COVID-19 virus.

We recognize that while your physical health is important, your mental, social, and financial health are also a priority. We encourage you to talk to your doctor, family, and support system to devise a plan you feel comfortable with as you decide when and how to re-enter society.

In the words of Dr. Anthony Fauci, “If it looks like you’re overreacting, you’re probably doing the right thing.” Ultimately, until a vaccine is found, we urge you to follow all precautionary steps recommended by the CDC to decrease your chance of getting COVID-19 infection.

We are in regular communication with our NephCure Specialists to help find the answers you need. We will keep you updated as we receive new information in the coming weeks and months.

As you develop your protection plan, here are some key points to remember:

This statement was prepared with input from NephCure Specialists:

Ambarish Athavale, MBBS, MD
Lawrence Holzman, MD
Elaine Kamil, MD
Ali Poyan Mehr, MD

Finding the Beauty in Kidney Disease: Keyaira Sanders’ Story

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“When I was 10 years old, I remember being at a family gathering and feeling absolutely horrible. For the life of me, I couldn’t figure out why I wasn’t feeling well, but I just wanted to feel better. The first sign that I noticed as a ten-year-old little girl was the puffiness around my eyes.

My parents started treatment with allergy medications for approximately a week, but as the days progressed, I began to feel worse. I noticed swelling all over my body, and I also noticed that I couldn’t urinate as much as I usually would. My mother then took me to my pediatrician; I still can picture the puzzled look upon her face when she examined me. She explained to my mother that this was far beyond allergies, and that she should take me to Le Bonheur Children’s Hospital in downtown Memphis.

After seemingly endless tests and blood and urine samples, one of the pediatric nephrologists came in and explained I had Nephrotic Syndrome.

He told us that this was a very rare disease and that I would need a kidney biopsy to determine what form I had. As a little girl, I had no clue what any of this meant.

The doctor made sure to immediately start me on a high dose of Prednisone (steroids) and Lasix (water pills) to help my kidneys get into remission and drain some of the fluid out of my body. The Lasix worked—I was up the majority of the night urinating!

The next day, I was scheduled to have my kidney biopsy. I was terrified—all I could think of was the huge needle going into my back. As the time drew nearer, my heart felt as if it was about to explode through my chest. Teddy bear in hand, I was taken back to the operating room.

The doctor told me to relax and that I was going to be given some “happy medicine.” The next thing I knew, I woke up back in my hospital room. I was in a bit of pain, but it wasn’t as bad as I had imagined.

After being in the hospital for almost five days, I was still receiving steroids daily. I began to notice my appetite increasing, and I later learned that this was one of the common side effects of Prednisone.

A few more days went by, we discovered I had Minimal Change Disease. Nephrotic Syndrome can be a very tricky disease, because everyone is different, and we all respond to medications differently. For me, the steroids were a go! I was able to take the high-dose steroids partnered with blood pressure medications (due to the steroids increasing my blood pressure as another side effect) and Lasix for the fluid.

After being in the hospital for a month and a half, I was finally able to go home and continue my treatment. I was so happy to finally be going home and going back to normal. Little did I know, this was only the beginning.

Fast forward to my sophomore year of high school. I remember being at after school band practice and being in so much pain. My upper back was hurting me on the left side, and I was very short of breath. I managed to get through the entire practice, but I knew something wasn’t right. I got home that night and I didn’t even want to eat; I sat straight up the entire night, just breathing. I remember crying all alone, thinking “I don’t know what this is, but I need to seek some kind of help.”

My mom took me to the emergency room the following day, and they told me that I had pneumonia. They didn’t check anything concerning my disease at all and sent me home with absolutely nothing. When we got home, I still couldn’t even hold down water!

My mother had had enough and called my father from out of town to take me back to the hospital in Memphis for another opinion. They rushed me to the back and began testing immediately. One test I couldn’t even do, because it required me to lie down flat, and I was in too much pain.

I cried all the way there and while we were there. I really broke down when a team of doctors came swarming into the room, asking my father to leave and saying that they had to start treatment right away because my case was very severe. I was only 15 at the time.

I remember hearing the words ‘pulmonary embolism.’ I was puzzled, but later found out that I had a blood clot in my left lung.

They had to begin treatment right away because this was life-threatening. I was placed on a ventilator for about a week, because one day I was trying to get up and blacked out.

There’s not much more that I remember about that experience, but the doctors told my parents that I was very lucky to be alive. Looking back, I am beyond grateful and I understand my purpose.

More time has passed. I am now 22 years old, and I look back at all of the experiences that I have had with this disease—the good and the bad. It may sound crazy, but I wouldn’t change anything that has happened to me. Having Nephrotic Syndrome has not only helped me to grow into the person I am, but it’s also helped me to appreciate life. I know from experience this disease is NOT easy at all; it can be painful and take a huge toll on you and those around you mentally, physically and emotionally.

Often times people assume that just because you may be in remission or back to normal physically, you must also be okay mentally and emotionally. But I’ve battled with depression because I felt as if I wasn’t normal.

I’ve had to miss tons of school days, my parents have had to miss work, I’ve had to try different medications through trial-and-error, I’ve had to give myself blood-thinner injections, and recently I’ve had to start Rituxan infusions—this has been a rollercoaster.

Living with this disease is very hard because you always have that “what if,” or that fear that you’ll relapse and have to go through it all again.

It’s a shame to say, but I’ve had doctors not even know how to treat me properly, and this is one of many issues that needs to be highlighted. This is why I am taking a stand: to be a voice to help others who may not feel comfortable sharing their stories. Hopefully me taking this stand inspires so many others to share their stories as well.

I hope whoever reads this finds some kind of positive message and holds on to that for hope. We are all in this together! A saying that I came up with myself and live by is this:

“While we all have something ugly that we go through, we must find the beauty in it and allow it to shape us into the person we are destined to be in life.”

So, no matter what you may be going through, just remember that we all have something ugly, but it’s up to us to bring out the beauty. What’s the beauty in your story?”

– written by Keyaira Sanders

Guidance on COVID-19 for Pediatric Kidney Disease Patients

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We know there are a myriad of questions surrounding COVID-19 and pediatric kidney disease during this unpredictable and unprecedented time. The follow list of FAQs were put together on March 12, 2020, in consultation with various NephCure Specialists who focus specifically on pediatric nephrology, to help you and your child maneuver through this pandemic in the safest possible way. As always, please consult with your nephrologist for specific guidance for your child.

  1. Should parents pull their immunocompromised children from school?
    • Monitor the information from the CDC on COVID-19, as well as your local hospital’s website. These are your best sources of up-to-date information given the changing situation and variation in different locations.
    • Doctors are currently most concerned about transplant recipients, dialysis patients, and children receiving moderate to high doses of immunosuppression, though we don’t know really know much about the increase in risk just yet.
    • The situation is changing rapidly, and many schools are already closing.
    • If your child’s school is currently open, you can generally send your child to school.
    • If your child has recently undergone a transplant and is on high-dose immunosuppressants, he/she should probably stay home for now.
    • As always, speak with your child’s nephrologist for specific instructions. They are an excellent source of information if you have ongoing questions.
    • This situation is changing day-to-day, and this guidance may quickly become outdated.
    • A good general rule is to follow the advice from the CDC that’s been issued for the elderly.
    • Also check your local government’s website for information that may be more specific to your region.
  1. Should patients stop taking their immunosuppressants?
    • You should never stop your child’s immunosuppressant medications unless you speak with your child’s nephrologist.
    • Stopping medications can lead to rejection of a transplant or relapse of Nephrotic Syndrome.
    • There may be rare situations where the immunosuppressive medications can be reduced or stopped, however please consult with your nephrologist first.
  1. How can patients who must go to a hospital or other center for treatment (like dialysis, plasmapheresis, etc.) protect themselves from exposure?
    • Practice the general recommendations to limit spread: Handwashing, limit face touching, limit touching public surfaces (like handrails), stay away from other people as much as possible, etc.
    • Pediatric-only centers will be better, if possible.
    • Minimize sitting in waiting rooms and time spent in hospitals as much as possible.
    • Clinics and dialysis centers have most likely developed plans to deal with the spread of COVID-19, including enhanced screening, separating patients into risk groups, etc. Routine medical center visits are probably safer than urgent care or emergency room visits.
  1. When should parents call their child’s doctor?
    • In general, you should call for the same issues that would typically prompt you to call your nephrologist.
    • COVID-19 may cause pneumonia and heart problems so call immediately if your child develops respiratory symptoms beyond a mild cough.
    • It is best to call your doctor first, but you may need to take your child to urgent care or the emergency room if the symptoms develop rapidly and are concerning.
    • Symptoms of COVID-19 infections are similar to those of a lower respiratory infection. Use the following guidance to determine whether or not your child needs medical care:
      • Respiratory symptoms beyond a mild cough: difficulty breathing, rapid or deep breathing, or a severe cough
      • Shortness of breath from continued coughing
      • Refusing liquids with decreased urine frequency
      • Crying without ability to be consoled
      • Fever that is not responsive to fever reducing medications
      • Behavior that is not normal for your child
    • Bringing your child to an ER or urgent care “to get tested” or for minor symptoms is currently not recommended since many sites are not offering testing and there is a risk of exposure to COVID-19 and other serious infections.

These recommendations are and will remain fluid. For the most up-to-date information, reference your local hospital’s website, your local government’s website, and guidelines from the CDC for high risk populations and children.

These guidelines were generated on March 12, 2020, in consultation with:

Larry Greenbaum, MD, PhD, Emory University
Sangeeta Hingorani, MD, MPH, Seattle Children’s Hospital
Elaine Kamil, MD, Cedars Sinai Medical Center
Frederick Kaskel, MD, PhD, FASN, Children’s Hospital at Montefiore
Kenneth Lieberman, MD, Hackensack University Medical Center
Joshua J. Zaritsky, MD, PhD, AI duPont Hospital for Children

Special update on Coronavirus (COVID-19) for kidney disease patients

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NephCure is closely monitoring the situation with the Coronavirus (COVID-19) as it continues to develop worldwide. The World Health Organization (WHO) has declared a Public Health Emergency of International Concern over the global outbreak of the coronavirus, and on January 30th, Health and Human Services Secretary Alex Azar II declared it a Public Health Emergency in the United States.

According to the most recent information from the United States Centers for Disease Control and Prevention (CDC), the majority of people who are exposed to the coronavirus will experience mild symptoms, and the likelihood for most people to develop serious illness after exposure is thought to be low.

However, older individuals (approximately age 65 and older) and individuals of all ages with underlying health conditions (like kidney disease) or compromised immune systems seem to be at higher risk of developing serious COVID-19 illness. If you are taking medications like prednisone (steroids), cyclophosphamide (Cytoxan), cyclosporine (Neoral), mycophenolate (MMF, Cellcept, Myfortic), prograf (Tacrolimus), rituxan (Rituximab), or any other immunosuppressant drug, your immune system is likely compromised.

Prevention is key. We urge you and your immediate family members to take the following precautions now to prevent or delay the spread of the coronavirus and limit your personal risk of exposure to it.

  • Wash your hands frequently.
    • Regularly and thoroughly wash your hands with soap and water for at least 20 seconds, especially after using the restroom, blowing your nose, coughing, or sneezing, or having been in a public place.
    • If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol.
    • Why? The virus can be transferred in bodily fluids, including saliva and stool. Washing your hands with soap and water or using alcohol-based hand sanitizer kills viruses that may be on your hands.
  • Avoid touching your eyes, nose and mouth.
    • Why? Hands touch many surfaces and can pick up viruses. Once contaminated, hands can transfer the virus to your eyes, nose or mouth. From there, the virus can enter your body and can make you sick.
  • Keep space between yourself and others.
    • Maintain at least 3 feet of distance between yourself and anyone who is coughing or sneezing.
    • Why? When someone coughs or sneezes, they spray small liquid droplets from their nose or mouth which may contain virus. If you are too close, you can breathe in the droplets, including the COVID-19 virus if the person coughing has the disease.
  • Practice respiratory hygiene.
    • Make sure you, and the people around you, follow good respiratory hygiene. This means covering your mouth and nose with your bent elbow or tissue when you cough or sneeze. Then dispose of the used tissue immediately.
    • Why? Droplets spread virus. By following good respiratory hygiene, you protect the people around you from viruses such as cold, flu and COVID-19.
  • Clean and disinfect your home.
    • Practice routine cleaning of frequently touched surfaces (for example: tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones) using a regular household cleaning spray or wipe.
    • Why? Current evidence suggests that novel coronavirus may remain viable for hours to days on surfaces made from a variety of materials. Cleaning and disinfection is a best practice measure for prevention of COVID-19 and other viral respiratory illnesses in households and community settings.
  • Avoid crowds as much as possible, cruise travel, and any non-essential air travel.
    • Why? Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.
  • During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.

This information has been collected from the CDC and the WHO and has been reviewed by NephCure’s Board Medical Directors.

In addition, you may want to contact your healthcare provider to ask about obtaining extra necessary prescription or over-the-counter medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a prolonged period of time.

If you have additional questions related to you or your loved one’s health, please contact your primary healthcare provider or nephrologist and follow their guidance. If you would like to be connected to a NephCure Specialist in your kidney disease, please refer to our list of experts here. If there are no specialists in your area, many of these doctors will provide a health consultation via phone.

NephCure will continue to monitor world and US-based health guidance, and if new information becomes available that pertains to our rare and chronic kidney disease community, we will provide an updated statement.

Additional information can be found directly from the World Health Organization or the Centers for Disease Control and Prevention:

https://www.who.int/emergencies/diseases/novel-coronavirus-2019
https://www.cdc.gov/coronavirus/2019-nCoV/summary.html

4-year-old Prepares for Transplant, Kidney Donated by Father

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Zane Westbrook, a 4-year-old from Arkansas, is preparing for his first transplant surgery at the end of the 

month. First diagnosed with Nephrotic Syndrome in 2016, Zane’s journey to transplant has been a winding one. His mother, Brandy, explains the how his family will be closer to him than ever before post-transplantation.

“Zane was 17 months old when he came down with a case of croup. He was in the hospital for eight days, but steroids still weren’t working. We were sent home, despite some swelling in his face and belly. A few days later, the swelling increased. We knew something wasn’t right and took him to the emergency room. That’s when our lives changed forever.

Zane was diagnosed in August 2016 with Nephrotic Syndrome. The doctor said it didn’t seem promising for the steroids to work since he had already been on them for two weeks. He was right.

Zane had a kidney biopsy in October 2016, which showed he had FSGS. He was put on Cyclosporine and Lisinopril and taken off steroids at this time. Cyclosporine still really didn’t put in him remission.

A genetic test was done and we found out he had NPHS2 mutation. Eventually, in January 2017, he was stabilized enough and was in a “partial remission.” This lasted for a few years until Spring 2019– that’s when his kidneys started to fail.

Dialysis -PD- started in May 2019. And a bilateral nephrectomy was done in October 2019.

Zane will be receiving a kidney from his father, Kirk! The transplant is scheduled for February 25th at Arkansas Children’s Hospital.

Kirk has been selfless throughout this journey. Not only has he willingly donated his kidney, but he lost 60 pounds in just one year to be able to donate it to Zane.

I have always been such an advocate of organ donation, but when you see someone you love go through something so hard it makes you want to advocate harder for organ donation.

Transplant is not a cure for Zane, it’s only a treatment option. We pray hard for better treatment plans for the future, so other kids won’t ever have to have transplants.

Zane is 4 and he will need another transplant in his lifetime. Living donation lasts around 15 -20 years.”

–Brandy Westbrook, Zane’s mother

Update as of February 27, 2020 from Brandy: “Zane is doing good! Creatinine is 0.6. No protein as of last check! Dad is doing good too. They are both being such rockstars. There was a complication with dad’s surgery and they had to open him all the way. Other than that it has gone smoothly.”

NJ Mother Fights to ‘Strike Out’ Daughter’s Kidney Disease

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Single mother, Kim Asmar, has had the privilege of raising her two daughters, Savannah and Madison, ages 10 and 8, respectively. While the first 2 ½ years of Savannah’s life was that of a typical newborn and toddler, her story quickly changed.

Savannah was starting to swell, sending Kim into a spiraling confusion wondering what was happening to her daughter’s health. Like most parents of Nephrotic Syndrome patients, Kim thought it was allergies at first because as the day went on, the swelling in Savannah’s face would go away. But as days turned into weeks, her entire body started to swell and that’s when Kim instinctively knew something was not right.

Learn more about Savannah’s diagnosis and journey with Nephrotic Syndrome, as well as Kim’s resilient fight to help her daughter, all while supporting NephCure Kidney International’s mission along the way. We are grateful to our volunteers across the globe, like Kim! 

NephCure: Can you tell us about Savannah’s journey with Nephrotic Syndrome?

Kim Asmar: As soon as I heard the words “Savannah has Nephrotic Syndrome,” uttered from the doctor’s mouth, I knew our lives would never been the same. Our “new normal” consists of testing her urine every morning and praying that there is no protein.

Every child’s story is different. Savannah’s cause for the Nephrotic Syndrome is called Minimal Change Disease. When Savannah starts spilling protein, she needs to take prednisone steroids. Once she responds to the steroids, we need to get a negative reading for 3 days, then we start to decrease the medication.

However, Savannah is a frequent relapser and is steroid dependent which makes managing this disease even more difficult. Although the steroids help keep her in remission, every time she catches a cold, she relapses and needs an even higher dose of steroids.

In total, she has been on steroids for 5 years, and was on a transplant medication for 4 years. This September our journey took a different road and Savannah was able to get off all her medications. For a total of 10 weeks, we didn’t have any medications and we only tested her urine once a week. Then, we got thrown a curve ball when we tested her urine one morning and the test came back positive for protein.

We are now back to testing her urine daily and back on high doses of steroids twice a day. Just when we thought all of this was behind us, we are back at square one. Savannah is a trooper and you will always see a smile on her face. But behind closed doors, you can see the medication and the physical appearance bothers her. When she cries and says she wants to be “normal” it breaks my heart.

NephCure: How did you first get involved with NephCure?

Kim Asmar: When Savannah was first diagnosed, I did not know anything about Nephrotic Syndrome. I did a lot of research online and decided to start a Meet Up group for people who had kidney disease or knew someone who had kidney disease. It was at that time, I learned about NephCure Kidney International and reached out to see how I could learn more for myself and Savannah and how I could help others.

NephCure: Can you highlight some of the successes you’ve had hosting an event to benefit NephCure over the years?

Kim Asmar: This February will be the 4th Annual Strike Out Against Kidney Disease event I’ve hosted. Over the past few years, we have raised several thousand dollars for NephCure. In addition, a lot of personal connections and friendships have formed.

This year, our goal is to raise awareness for all those that suffer from kidney disease. Our hope is that one day there will be a cure! Let’s strike out kidney disease together!

NephCure: Why is it so important for you to be involved with NephCure and our mission?  

Kim Asmar: It is important for me and my family to be involved with NephCure so we can be part of a family where we understand what one another is going through. Everyone’s road they travel is different.  However, there is a commonality amongst everyone.  Every day is a new journey.  Being that Nephrotic Syndrome is so unpredictable, you never know what each second is going to bring.

To learn more about Kim’s New Jersery Strike Out Against Kidney Disease event, please visit give.nephcure.org/StrikeOut

Looking Back, Moving Ahead: A Message from NephCure’s Co-Founder

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This article is written by Lou Antosh, one of NephCure Kidney International’s co-founders and current Advisory Committee Member. It was originally posted in a magazine in conjunction with NephCure’s New York Countdown to a Cure event in 2008. Lou’s daughter was diagnosed with FSGS in 2000, when she was 16 years old. 

Lou Antosh (M-R) with his wife, Joanne (R), his daughter, Christine, who is affected by FSGS (M-L), and her husband (L) at Philadelphia Countdown to a Cure on September 19, 2019.

It wasn’t a Big Bang that started NephCure. More like rising whimpers from hurting families scattered about in Michigan (The Smoklers), Seattle (The Ortons), and Philadelphia (The Stewarts and Antoshes). We found each other out of desperation, shocked and angered to hear that Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS) were researched too little.

When Brad Stewart, my wife and I went to Bethesda, MD, to ask the National Institute of Health
(NIH) why so little was being done, the Feds encouraged us to be advocates. We can’t lobby Congress, they said, but you can. They told us of a few other individuals we might want to contact. As a result, I first heard the voice of Irv Smokler on the phone. He and Brian Orton had chartered an organization. We needed to form a board, to talk about our stores, about fighting for the kids.

Lou Antosh and his wife, Joanne, at New York Countdown to a Cure in 2007.

There is no NephCure without Irv, whose inner fire raged despite his son’s remission. Long before us, he befriended kidney researchers at the University of Michigan and elsewhere, supported them, learned the lingo. Irv understood our fears. He always asked sincerely how our kids were doing. He knew we needed to find allies in Washington, DC. He asked always “What can I do?” He did a lot.

Very early on, we watched as top FSGS researchers met at the NIH to discuss the Nephrotic Syndrome/FSGS problem and possible battle plan. Irv understood more than me, but one fact was clear: these distinguished doctors didn’t know nearly enough.

Lou Antosh and his daughter, Christine.

The life of a baby is cute in the watching, but boring in the telling. Our infancy had mistakes, stops and starts. The only money for a long time was Irv’s. We held our first ptient education day in Philadelphia on the day our daughter was married. I helped set up and left, only to hear later from Brad that one benefactor had handed us a check for $10,000. It seemed a sacred moment, like God telling us: “This is a good thing.”

We moved headquarters from Michigan to a tiny office in New Jersey and searched for an executive director. Henry Brehm showed up an after that, no mistakes were big enough to stop us. I can’t figure out why his phone ear is normal sized. Passion, intensity, endurance and more, all in a gentlemanly package. A dynamo whose staff is every bit as amazing as the chief.

Lou taking to the podium to address audience at past NephCure event.

The branches sprouted. Melanie, Chrissy and Autumn testified before Congress. Our truly caring advisory board gave us street cred when we exhibited. We had a patient day in Seattle and Brian Orton eventually popped an idea—a motorcycle event that has yielded huge funds for NephCure. The Stewarts threw a beef and beer and others followed suit. It would take thousands of words to list all of you who built NephCure with pain and walk-a-thons and checkbooks. It grew, and the NIH officials watched and said, yes, this is good.

Since, we have dedicated over $6 million towards research—an astounding amount considering where we started, and our growth continues.

Recently, our biggest breakthrough came in the form of NEPTUNE, the Nephrotic Syndrome Research Study Network. We partnered with research institutions and with $6.25 million from NIH, this five-year, $10.25 million study hopes to open doors to the answers we are looking for.

Until the disease is cut off at its roots, NephCure will grow because it is fed by the desperation and belief and hope of all of you who read this.

Your whimpers shall never be in vain.

 

If you or a loved one suffer from Nephrotic/Nephritic Syndrome, FSGS, IgAN, or other protein-spilling kidney diseases, please consider joining one of the 25+ clinical trials in the glomerular disease space. To find the trial right for you or your loved one, visit KidneyHealthGateway.com

Scientific Advisory Board Member Wins 2019 Halo Award

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NephCure is proud to announce one of its Scientific Advisory Board members, Dr. Jochen Reiser is the recipient of the 2019 Hero of Medicine Halo Award. This award celebrates scientists for their tireless pursuit of cures and treatments that help people live better lives.

Dr. Reiser will be honored with the award Saturday, October 12, 2019 at the 2nd Annual Halo Awards celebration at the Museum of Science and Industry in Chicago, IL. For more information about the Halo Awards, please visit www.halocures.com/translation/2019-halo-awards

Racing to a Cure with Team “R U Kidneying Me?”

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An avid kayaker, runner, and all-around outdoorsman, Robert Gyurjan is turning his passions into a way to raise awareness about focal segmental glomerulosclerosis (FSGS).  Originally from Debrecen, Hungary, Robert moved to the United States in 2000.

It wasn’t until eight years later that he realized something wasn’t quite right with his health. He was ultimately diagnosed with FSGS at the age of 30. Rather than let the disease take control of his life, he has found a way to use what he loves to raise critical funds to help find a cure; even creating the “R U Kidneying Me?” team.

NephCure: How did you first get involved with NephCure Kidney International?

Robert: I was diagnosed with FSGS in 2008. My proteinuria was somewhat under control for years, then a test at the end of 2017 showed that things might be going downhill. So, I wanted to search for and reach out to other patients looking for doctors and resources. A Google search led me to NephCure and I was hooked from there on out!

What are some goals you are setting for yourself?

I started fundraising for NephCure last year and I’m continuing my efforts this year. While the obvious goal is to raise more money each year, I have realized that raising awareness is just as important. I’m trying to reach more people and educate them on FSGS through various type of marketing tools such as social media and newspaper articles. I was even able to put up a billboard encouraging folks to donate to my team “R U Kidneying Me?”

What are some of your successes to date?

In 2018, I was able to raise a little over $4,200. This year, as part of Countdown to Cure in Boston and a New England champion, I have been able to raise about $3,500 so far; those numbers are increasing as you read this!

Are there any challenges you have faced?

Since I use the Josh Billings Triathlon as a ‘vehicle’ for my fundraising efforts, there is always a personal challenge to complete this 27-mile bike, 5-mile kayak and 6-mile run competition. Last year I did all three myself, but this year I was a kayaker as part of a team. On the other hand, while the local hospital has a great nephrology department, it seems like there is never enough doctors and having a difficult time with replacements.

Why is it so important for you to get involved with NephCure and our mission?

Most of the volunteers are either related to patients or patients themselves. There is nothing more driven, dedicated than a heart of a volunteer. I have only met/talked with a handful of NephCure friends, but I have always felt a special connection from the first minute I got involved with them. Whether it was discussing a project or talk about the disease, it is truly like a big family.

Is there anything else you’d like to mention?

With some much-appreciated help, I have created my own promo and team name, “R U Kidneying Me?”, with a weblink www.TeamRUK.comthat is linked to my NephCure fundraising page for easy access. I am also a single father of a wonderful 10-year-old son, Sammy. Hockey and baseball are his passions!

2020 Podocyte Conference in Manchester

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Dear Colleagues,

We have carefully considered our options for the 13th International Podocyte meeting with regard to COVID-19.

Our upmost priority is to ensure the safety of participants and their communities.

As such we will postpone the meeting until 2021 and will send a save the date announcement in the coming weeks.

We thank you for your understanding and we will be in touch with all who have already registered to arrange registration fee refunds.

With best regards,

The Local Organising Committee, the International Organising Committee and NephCure

Our Mission

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.

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