NJ Mother Fights to ‘Strike Out’ Daughter’s Kidney Disease January 30, 2020 by Kylie Karley 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 January 9, 2020 by Kylie Karley 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