You Can Change FSGS Treatment Options: EL-PFDD 2020 April 28, 2020 by Kylie Karley Externally led patient-focused drug development (EL-PFDD) meetings bring together patients and care partners, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. The goal is to hear from patients who have the disease, in order for the FDA and pharmaceutical companies to understand the patient experience. This year, NephCure Kidney International and the National Kidney Foundation are coming together to conduct an EL-PFDD meeting, on August 28, 2020, to inform the FDA about the patient’s perspective of living with focal segmental glomerular sclerosis (FSGS). The meeting will be held online. We invite anyone who has FSGS, lives with someone affected by it, or is interested in it to attend this meeting. This year’s EL-PFDD meeting on FSGS will be co-chaired by two NephCure Specialists, Drs. Laura Mariani and Suneel Udani. The two of them answer the following questions regarding the importance of patient attendance at the meeting in August. As a patient with FSGS, why should I consider attending this meeting? EL-PFDD co-chair and NephCure Specialist, Dr. Suneel Udani Because FSGS is rare, most people designing and evaluating the results of clinical trials, that test new medications, have not met anyone with FSGS. While clinicians taking care of patients with FSGS understand the impact the disease has on your lives, this impact is not something that can always be captured on a blood or urine tests, and therefore regulators who determine which medicine becomes available may not recognize the issues that patients face each day. This meeting is your chance to explain not only the impact of the disease, but also the limitations of our current therapies. Each patient’s experience is unique, so hearing from as many different people as possible is incredibly helpful. We encourage you to share not only what you would not only like, but also what you would expect from new treatments in terms of how they are administered, for how long the medication must be taken, the side effects, or anything else you think would be relevant to new treatments. Each segment of the medical community (clinicians, researchers, industry leaders) benefits from hearing your perspective so that the new treatments available truly meet the needs of the intended population—you. The EL-PFDD meeting is a unique setting where all these groups—patients, clinicians, scientists, industry, and regulators—are gathered together to listen. Therefore, your attendance and insight are dependent and vital to this meeting’s success. How does this meeting contribute to putting new medications for FSGS on the pharmacy shelf? EL-PFDD co-chair and NephCure Specialist, Dr. Laura Mariani The comments from the meeting can inform the FDA about the urgent need for new, more effective, and less toxic treatment options for FSGS. The FDA tries to bridge communication between patients and the medical community. The FDA aims to develop criteria that not only represents the effectiveness of therapies, but also determines if these therapies truly help people feel better. In gathering patient feedback, this meeting will help companies design better studies to assess the symptoms most relevant to patients and help the FDA interpret the results of those studies with the patient’s needs in mind. Why does the Food and Drug Administration want to hear from patients? The FDA recognizes that patients and their family members are the experts on what it is like to live with FSGS and to take the currently approved medications. This meeting can help the FDA better understand the impact of the disease and its treatments on patients. As a doctor, why do you believe the EL-PFDD is important? “As a physician, I have been frustrated with the treatment options for Nephrotic Syndrome since I learned what they were, how effective (or not) they are, and the side effects we ask patients to tolerate. However, for the first time in our history, there are more candidates for treatments and studies to investigate their impact. The potential for multiple new therapies has changed my perspective. Whereas in the past our bar for being excited for a new treatment was simply if it made an impact on abnormal lab tests, now we have to raise the bar to not only look at improving laboratory tests, but also how effective a treatment is at helping someone with the disease live better. We can never have that insight without the patient voice. Rather than hearing about patients’ experience after a new medicine has been approved, the EL-PFDD provides an opportunity for patients’ voices to truly shape the narrative and make sure that the approval process includes the perspective of those living with the disease and what is important to them.” -Dr. Suneel Udani “I want to be able to offer patients more effective and less toxic therapies for FSGS. To do that, we need to lower the barriers at every step of the drug development and approval process. Hearing directly from patients is the best way for our partners in this process to understand the urgency of need in this area and to help all of us improve the lives of patients living with FSGS.” – Dr. Laura Mariani To register for this year’s EL-PFDD meeting focusing on FSGS on August 28, 2020, please click here.
I Stay Home For: Keith April 23, 2020 by Kylie Karley Keith, a 4-year-old from New Hampshire, was diagnosed with Nephrotic Syndrome one year ago, in April 2019. Originally, Keith was responsive to steroids, but relapsed each time doctors tried to taper him off. In October 2019, he stopped responding to steroids altogether. Keith is currently on his third medicine and his family is hopeful this one will work. His mother, Jackey, shares their COVID-19 story. “I stay home for Keith. Our lives didn’t change as drastically as yours when COVID-19 came around. For the last several months we’ve already been wearing masks, secluding ourselves and working to stay healthy. Keith has Nephrotic Syndrome, a chronic kidney disease and has been in relapse since October. He hasn’t responded to a couple of treatments and is now on an immunosuppresant drug which puts him at greater risks for complications from something like COVID-19 but will *hopefully* finally put him into remission. You want to know something that will make you grateful? Spending time at Boston Childrens Hospital. We have spent a lot of time inpatient and outpatient and have met families going through unimaginable pain and suffering. Having to stay home should be a luxury! We still have to go to the hospital a lot but will continue to be careful and are SO thankful for our BCH family and for NephCure for bringing awareness to families like ours. #IStayHomeForNephCure.” Through her personal Facebook page, Jackey Bennett was able to raise more than $1,600 to support NephCure Kidney International’s COVID-19 Emergency Fund!
Clinical Trials and COVID-19: FAQs from Patients to Sponsors March 31, 2020 by Kylie Karley In response to the COVID-19 crisis, NephCure Kidney International has prepared a list of FAQs, solicited from patients in our community, to pharmaceutical companies sponsoring clinical trials. We urge sponsors, with patients currently enrolled in studies, to be proactive in your communications. This may be addressing these questions via email, phone conversations, orthrough in-person discussions. For our patient community, we are doing our best to provide these answers to you and/or direct you to the appropriate resources. As you review these questions, you will see that many of these require answers specific to your studies (i.e. the introduction of virtual clinic visits or offering reimbursement for alternative travel arrangements). I am worried about leaving my house to go to my scheduled appointment. What should I do? Assuming you are not exhibiting symptoms of the virus and are able to get to your appointment, we encourage you to keep all previously scheduled appointments. Should there be a change in operating procedures at your clinic, your healthcare provider should notify you in advance. Some clinics are offering virtual visits. Please contact your study coordinator for more information about your specific site. My state/city/county has placed restrictions on ‘non-essential’ travel. Do my study visits fall into this category? Like grocery stores and pharmacies, medical facilities and hospitals remain open. Clinical study appointments are essential to your overall health so you should plan to attend your scheduled appointments unless otherwise directed. Be sure to contact the study team immediately should you experience any symptoms of the virus at any time. Can I avoid coming to the clinic for study appointments during the COVID–19 outbreak? We encourage you to try to attend your study visits. These appointments will occur unless something changes at your clinic, in which case you will be notified in advance. Some Sponsors may move to virtual visits to protect the health of study participants. You can contact your study coordinator to further discuss your options. I am afraid to take public transportation given the number of people and concern over being exposed to the COVID-19 virus. Are there alternate ways for me to get to my appointments? This feeling is perfectly understandable during this time of uncertainty. If you can avoid public transportation, we strongly encourage you to do so. Should you choose to take an Uber, Lyft, or other mode of transportation to attend your appointments, the company conducting your trial will most likely reimburse you for the full amount. Be sure to contact your study coordinator before you make this decision so you can to fill out the appropriate forms for changing your mode of transportation. What happens if I miss a study visit? Can I just pick up at the next one? It is important for you to notify your study coordinator if you are unable to make an appointment. The coordinator can assist you with scheduling another appointment and/or help with travel arrangements if needed. However, we strongly encourage you to try to attend all of your regularly scheduled study visits. Why is it important for me to continue participating in the trial as scheduled? We are thankful to all the volunteers who are participating in our study. Clinical studies are developed with scheduled procedures and visits in mind from the beginning. For this reason, we hope that you will do your best to adhere to your study visit schedule to the best of your abilities. Questions best addressed by individual sponsors If I need to change my travel arrangements to my appointments, who do I contact? Is the study medication I am taking an immunosuppressant? In other words, am I immunocompromised right now? OR Does the trial medication put me at greater risk of contracting Coronavirus? What type of financial compensation can I receive if the Coronavirus affects my travel plans? If I am under quarantine, can I still participate in the trial? Who should I contact with questions? Can I have labs drawn and/or medication administered at home? Can I complete my study visits virtually through telemedicine visits? If I can get to my study visit, will face masks be available when I arrive?
COVID-19 Patient FAQs March 31, 2020 by Kylie Karley Does kidney disease put me at a higher risk? Patients with protein spilling kidney disease are at higher risk for moderate to severe illness from COVID-19, especially when kidney function is below normal. Many patients are on immunosuppressive medications that work by keeping the immune system less active and in turn, makes it harder to fight infections such as COVID-19. Those with advanced kidney weakness, or on dialysis also have weaker immune systems. You may also have high blood pressure and possibly other comorbidities. Which treatments are considered immunosuppressive medications? The following medications that are used to treat protein spilling diseases are immunosuppressive medications: ACTHAR Belatacept Cellcept (Mycophenolate mofetil) Cyclosporine Cytoxan (Cyclophosphamide) Imuran (Azathioprine) Prednisone, prednisolone (Steroids) Rapamune (Sirolimus) Rituxan (Rituximab) Tacrolimus (Prograf) I am not on immunosuppressive medications, but I am spilling protein in my urine. Am I still at risk and/or immune compromised? If you are actively spilling protein in your urine, your immune system is weakened and you are likely at higher risk of developing severe illness from COVID-19. Because the filtering units of your kidneys are not filtering properly, they are spilling all types of protein including immunoglobulins. Immunoglobulins, also known as antibodies, are proteins in the blood that help fight bacteria or viruses and their loss makes your immune system weaker. I am currently relapsing, should I wait to begin taking immunosuppressants until COVID-19 passes? You should discuss the best plan of action with your nephrologist because each patient is different. However, your priority (even during the COVID-19 outbreak) should always be to stop your protein spilling and protect your kidneys. If you generally respond to immunosuppressive therapy, it is likely a good idea to begin treatment. Again, please discuss the risks and benefits with your caregiver. I am currently in remission, should I consider stopping or lowering my immunosuppressive medication? During the COVID-19 outbreak, it is not recommended to stop or lower your medications. Stopping immunosuppressants can lead to rejection of a transplanted kidney or a relapse of protein spilling. You should never stop your medications without first speaking with your nephrologist first. There may be rare situations where medications can be reduced or stopped, but only under the care of your nephrologist. Should I stop taking my ACE inhibitor blood pressure medication? There have been some pre-clinical and clinical studies linking COVID-19 and the renin-angiotensin system. This has led to speculation as to whether use of ACE inhibitors or Angiotensin Receptor Blockers (ARB) increase the risk of moderate to severe illness in COVID-19; NephJC and other professional societies have found that the evidence is insufficient, and in some cases conflicting—some data even suggesting that ARBs may be protect the lungs in viral pneumonia. Patients who are taking ACE inhibitors or ARBs should not change their medication unless told to do so by their nephrologist. To read more about ongoing developments on this topic visit http://www.nephjc.com/news/covidace2 Will there be medication shortages? There will likely be some drugs on backorder due to COVID-19. It’s difficult to know which medications will be impacted. It’s important not to panic or hoard medications. Call your doctor and/or pharmacy to see if you can get medications filled early or in 3-month supply. It may be best to begin using a mail-in pharmacy during the outbreak. You can monitor information regarding specific drug shortages here. Should I Shelter in Place? The key point to remember is that you cannot get the infection without exposure to someone who has the infection. Therefore, you should make every effort to stay at home and limit your exposure. The degree of quarantine may differ depending on where you live. The best plan is to avoid going out for non-essential reasons and when you do to limit exposure to others and practice strict hand hygiene and clean things that you may have touched before washing your hands (such as your phone and your keys) Getting fresh air and exercise close to your home, with proper social distance from others is certainly safe and may help cope with the stress arising from this situation. Should I go to my doctors’ appointments? It is important to first call your doctor to discuss if you need to physically go to your appointment. Many clinics are offering telemedicine, virtual appointments over the phone or on your computer. If your appointment requires testing or some form of physical treatment, you should discuss if it is essential or if you can reschedule for a later date. I need labs drawn, where is the best place to go? Many patients require frequent labs to stay on top of their care. You should contact your doctor to determine if your scheduled labs are required now, or if they can wait a month or two. If you must have labs drawn during the COVID-19 outbreak, consider going to a small outpatient lab rather than a lab in the hospital. Always use good hand hygiene and assure the phlebotomist does as well. Schedule an appointment if possible, go first thing when the lab opens and wait in your car for your turn, to limit your exposure. Is it safe for immune compromised patients to order carry out meals? Many restaurants are closed to the public to enforce social distancing but are still open for carry out. There is some risk in ordering food from a restaurant because employees may be infected with COVID-19, but there appears to be other a very small risk of food-related transmission. Should you choose to order carry out, be sure it’s from a valued, trusted business, you can transfer the food from the delivered containers to your own plates and you reheat the food prior to eating. Other precautions include paying over the phone and asking them to put the meal in your trunk instead of passing the food through your window. Once home, repeat hand hygiene after assuring you have cleaned all surfaces. How can I combat anxiety and depression during this time? The fears, worry, and stress that come with being at increased risk for moderate to severe COVID-19 illness are real and can lead to even greater amounts of anxiety and depression. Being separated from friends and loved ones while social distancing can also cause feelings of isolation and loneliness. We want you to know that you are not alone in your struggles. NephCure is offering a 4 week virtual series about “Cultivating Resilience During Anxious Times: Strategies for Staying Steady while Navigating Covid19” Please join us on Thursday, March 26, April 2, 9, & 16 at 7:00 PM EDT via https://zoom.us/j/890400605 We also offer several ways to connect with others going through similar journeys with protein spilling kidney diseases at NephSpace our online support community and direct connections through our Patient to Patient Connections Program. To talk with someone immediately, contact our Patient Advocate, Kelly Helm at khelm@nephcure.org or 610-540-0186 x38.
Spotlight On: Savannah Dauster, NephCure’s New Community Development Coordinator March 27, 2020 by Kylie Karley 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!
COVID-19 Germs Experiment for Kids! March 17, 2020 by Kylie Karley 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 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!
Guidance on COVID-19 for Pediatric Kidney Disease Patients March 13, 2020 by Kylie Karley 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
4-year-old Prepares for Transplant, Kidney Donated by Father February 20, 2020 by Kylie Karley 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 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