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! 

NephCure Kidney International: How long have you worked for NephCure and what roles have you held?

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)
  • Soap
    

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.

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.”

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 2^nd 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!

This past weekend kicked off NephCure’s successful ‘fundraising season’ with two first-year events, Rocky Mountain Pig Jig and Philadelphia Countdown to a Cure, as well as an outstanding New York Walk. Combined, the three events raised roughly $115,000to support our mission of finding better care and new treatments for those battling rare protein-spilling kidney diseases, like Nephrotic Syndrome.

On Thursday, September 19, the Inn at Villanova in Wayne, PA transformed into the 2019 Philadelphia Countdown to a Cure. The tables were set, auction items displayed, and dinner was served. Over 80 guests showed up to the evening dedicated to funding research and finding a cure for our community battling rare kidney diseases.

“This is the first time we’re honoring those specifically in the medical field, I think that’s very special,” Deb Pollock, NephCure’s National Director of Advancement said. “It was heartwarming to see how involved and invested each physician, researcher, and medical professional, who attended Countdown, was.”

One of NephCure’s original co-founders, Lou Antosh, proudly took to the podium to explain the history and significance the organization plays in patients and physician’s worlds alike. He went into great detail, making sure the crowd thoroughly understood the dedication and work Dr. Lawrence Holzman, the 2019 Philadelphia Countdown to a Cure Honoree, has put into figuring out what exactly the disease is.

Just days after, on September 21^st, over 1,700 miles away in Colorado Springs, CO, another first-year event was underway: the Rocky Mountain Pig Jig. A simply beautiful afternoon to invite hundreds of people out for the day comprised of live music, dancing, games, prizes, and a BBQ competition.

“From the moment you stepped foot into the parking lot, the overwhelming and delicious smells from the BBQs surrounded you. I was there at 8am and even then, I thought ‘Wow, I’m already hungry!’” Pollock recalled.

With the BBQ smell wafting throughout UCHealth Park, the live music billowed throughout the stadium. Several bounce houses, cornhole boards, and craft tables resembled paradise for the children at Rocky Mountain Pig Jig. While their parents lingered around their version of paradise– the beer garden.

The event not only welcomed those from Colorado Springs, but also those from neighboring states and even across the country.

Meanwhile in New York, on the very same day, nine teams helped raise more than $40,000 for our organization at the region’s walk held in East Meadow, NY. Dozens of volunteers, patients,and their families rallied together to share their personal stories and walk side by side for a cause that affects their loved ones.

Our regional leader, Marlene Botta, accepted an Emerging Leader Award from the New York State Assembly on the behalf of her daughter, Jackie. Marlene and other NY Walk committee members put in an immense amount of work to organize a fantastic event for those affected by rare kidney diseases.

The combined $115,000 raised for NephCure’s mission of finding better care and new treatments for those battling rare forms of kidney disease could not have come at a more crucial time. After decades of work, the hope of new therapies is now very near. We have the rare opportunity to bring the first treatments ever for Nephrotic Syndrome into the hands of patients in the next several years. Thank you for all who attended the 2019 Philadelphia Countdown to a Cure, Rocky Mountain Pig Jig, and New York Walk. Upcoming NephCure events include Silicon Valley Pig Jig and New Jersey Countdown to a Cure, to find more events in your area visit give.nephcure.org.

Just like any typical 14-year-old boy, Rocco Murdocca was growing and changing. On the outside, nothing set him apart or caused alarm for illness.

The changes were normal, gradual, and slight enough that as an outsider, you wouldn’t be able to tell the difference. In fact, his parents, Julia and Rocco Sr., had a hard time realizing anything was wrong. The only sign that sparked concern was his weight gain.

“Over the course of a year, he gained almost thirty pounds! I thought he was getting fat and made him join the gym. He kept saying, ‘Ma, everyone at the gym says my legs are jacked.’ But they weren’t muscular, they were just building up with fluid,” Julia explained.

Confusion engulfed the Murdocca family, as they tried to piece together what could possibly be happening to Rocco’s body.  “There were a lot of signs that were there, but we just never knew,” she recalled.

After a counterproductive trip to urgent care, Julia instinctively knew her son needed to see another doctor. Rocco’s pediatrician was the first to notice the spilling protein.

“The pediatrician then told us to go to the emergency room and that’s where they told us he has Nephrotic Syndrome,” Julia said.

During his stay 4 day stay in the hospital Rocco received several rounds of albumin infusions to improve his renal function. Over that short time, he lost the thirty pounds he had gained over the previous twelve months.

Just shy of his 15^thbirthday, Rocco was initially given a rigorous course of steroids, but Julia demanded he receive a biopsy. It was that biopsy that confirmed their fear: focal segmental glomerulosclerosis (FSGS).

“I felt like I was in a dream. We all thought, we have a diagnosis, he’s going to take medicine, it’s going to get better. This happens to other people, this doesn’t happen to us,” Rocco’s mother said.

To their dismay, the steroids did not work, and Rocco was then given a concoction of alternative second line drugs.

“They did more damage than help for him. He wasn’t responding to any medication,” Julia noted.

Almost immediately after Rocco’s diagnosis, she saw a shift in her family. Rocco Sr. and her three older daughters kept their emotions, thoughts, and words to themselves.

“We were all just numb. We were afraid to discuss our feelings. My children were afraid to come to me and say, ‘I had a bad day.’ It was weird,” Julia said.

Despite the abounding hospital visits, medication, and side effects, she came to understand the importance of not allowing the disease take control of her and her family’s life.

“Don’t focus on the disease. You have to focus on your whole family because when you neglect other members of the family, that’s when you start to fall apart. That’s when you let the disease control your life,” Julia advised.

“Pay extra attention to the other children in your family that are healthy because although what they’re going through is not as serious as your child who is affected, what they’re going through is just as important.”

In the beginning of 2019, Rocco’s kidneys rapidly declined, losing nearly 90% of their function. This propelled him into dialysis only a month later, with a kidney transplant on the horizon.

Ultimately, Julia and Rocco Sr. made the decision to delay the transplant so that their son could enjoy his senior year of high school to the fullest.

“He wanted to go to prom, he wanted to go to on his senior trip, and graduate. So, we did dialysis until he graduated high school in June,” Julia noted.

In the meantime, both parents were tested and ended up being a donor match for Rocco. With Rocco Sr. being a stronger match, he agreed to give one of his kidneys to his son. And so, the preparation began. First came Rocco’s double nephrectomy on July 5, 2019.

The transplantation date was scheduled for just over a month later, on August 13^th. Julia and her family remained steadfast, mentally preparing for the transplant without letting it consume their entire world.

As the transplantation date arrived, Rocco and Rocco Sr. courageously took on the disease together. Unfortunately, just four days after receiving his father’s kidney, it was confirmed Rocco’s FSGS came back. “We were absolutely devasted,” Julia declared.

Since August 17^th, Rocco has been undergoing plasmapheresis and rituximab infusions in hopes of achieving remission.

“My son is resilient; I wish I had half of the strength that he has,” Julia expressed.

The Murdocca’s focus now remains on bringing Rocco back to full health.

Although, Rocco currently has a lot of unknowns, one thing he’s certain about is his love of all thing’s music. While he’s not positive where he’ll go to college, he knows his passion for playing instruments and songwriting will drive him to great success.