Your health and safety are our number one priority.
With the recent establishment of the Community Development Department at NephCure Kidney International, we’d like to introduce you to face you may already recognize. Our very own Savannah Dauster has made the transition within the organization to Community Development Coordinator. She explains she’s looking forward to working with our volunteers across the country and continuing to provide information and resources that will truly help our NephCure family. Get to know her a little bit more!
Savannah Dauster: I starter at NephCure in June of 2018 as the Office Administrator, and I just recently transitioned into my new role as Community Development Coordinator.
NephCure: You’ve recently been promoted to the Community Development Department to help support our Regional Volunteer Communities. What are you looking forward to the most in this new role?
Savannah: One of my favorite things in the world is listening to people and asking questions, so I think the thing I most look forward to is just that. The fact that this new position will afford me the opportunity to get to know and support our patients and volunteers better is super exciting to me!
NephCure: Why are volunteers so valuable to an organization like NephCure?
Savannah: NephCure is nothing without its incredible volunteer base, especially because Nephrotic Syndrome is such a rare group of diseases. Having “boots on the ground” in so many regions of the country is invaluable to our efforts. Our volunteers reach and support new patients in ways that our staff never could!
NephCure: What excites you most about the future at NephCure?
Savannah: Probably the fact that our goal is so close to being accomplished! NephCure has come a really long way in the last twenty years, and I am happy and proud to be here at a time when a treatment might finally make it into the hands of our patients.
NephCure: How do you like to spend your free time?
Savannah: I particularly love reading and binge watching Netflix, playing board games with my husband, and spending time with my church!
As schools are closing and some parents are working from home more than they regularly do, you may find your family spending more time together than before.
Here’s a fun experiment to do with your kids to explain the importance of washing our hands amid the Coronavirus pandemic.
- What you’ll need:
- Pepper (which acts as the germs)
- Bowl of water (which acts as surface of our skin on our hands)
- Step 1:
- Shake pepper on top of the water. Give it a good coat! These are the germs that are on the surface of our skin.
- Step 2:
- Have your child stick one fingertip directly into the bowl of water with pepper or “germs” on it.
- You’ll see the germs stick all over your hand when you don’t wash your hands!
- Step 3:
- Rub a clean fingertip in soap. Make sure it is coated well.
- Step 4:
- Stick the finger with the soap on it into the “germy” water and watch the germs spread out across the water!
- This is because the soap breaks down the virus!
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.
- 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.
- 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.
- 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.
- 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
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.
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:
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.”
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
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.
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.
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.
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.
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
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
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!