Spotlight on: Allison Kostiuk, NephCure’s Manager, Volunteer Programs March 26, 2019 by Kylie Karley A dedicated volunteer herself, now managing our ever-expanding nationwide army of NephCure supporters, Allison Kostiuk is leading the pack of our Regional Volunteer Communities. Our newest regional initiative is a massive undertaking, but one which Allison sees as an amazing opportunity to help empower people, get patients quicker access to expert care, and ultimately raise more awareness for Nephrotic Syndrome. Allison, NephCure’s Manager of Volunteer Programs, makes it look easy. Find out what makes her job so unique and learn more about our new Regional Volunteer Communities that are changing the game for NephCure. NephCure: How long have you worked for NephCure? Allison Kostiuk: From February 2015 to September 2016, I was the Regional Manager for the Eastern Region. I returned to NephCure in March 2018 as a Patient Engagement Manager, and in August 2018 I took on the exciting role of Manager of Volunteer Programs. NephCure: You’ve recently been involved with creating, managing, and recruiting our volunteer communities. What has that experience been like? Allison: This has allowed me to be entrepreneurial in my way of doing my day-to-day job, as we have never had this structure before. I love the creativity and the “learning by doing” at times. It has also allowed me to meet some amazing volunteers who have always been supporters of NephCure—when asked to step up and do more, they raised their hands and said “Pick me!” Amazing! NephCure: Why are volunteers so valuable to an organization like NephCure? Allison: Volunteers bring such depth to an organization like NephCure, as they bring not only their time and expertise, but first-hand knowledge of living with Nephrotic Syndrome. NephCure: Can you tell us more about the structure of the volunteer regional communities? Allison: For this first year, we have 12 Regions in the United States, some bigger than others, but this is a place to start. Each region has a Volunteer Leader, a Regional CEO if you will. The leader will work to manage, motivate and recognize the volunteers while meeting our goals and objectives as an organization. Then we have lead volunteers in Advocacy, Fundraising, Marketing/Communications, Patient Engagement/Support, and Voice of Patient. As new patient families meet us and indicate they want to get involved, a short training per area will occur and they will be introduced to their area lead. Each volunteer will play a role in that region in that area. We are also working to create regions internationally. NephCure: What excites you most about the future at NephCure? Allison: This larger corps of volunteers to help us meet our missional goals as an organization and to connect to more folks locally so that they don’t feel so isolated. NephCure: What are some challenges have you faced with this major task of the regional volunteer communities? Allison: Some regions are very big geographically, but like I stated above, we had to start some place this first year. Eventually, we would love to see a Regional Leader in each state, with a smaller geographic area to connect. International Regions will also be a challenge, but it is a great need to help connect these families to NephCure. NephCure: How will these volunteers have an impact on the way NephCure is run? Allison: NephCure’s biggest asset has always been our volunteers. This new structure will ensure our volunteers feel equipped, supported and recognized for their important roles. This structure can also address local needs more efficiently. If you would like to get involved and volunteer for NephCure, the best way is to reach out to me is via email: akostiuk@nephcure.org. NephCure: When you’re not focused on volunteers and NephCure, what are you doing? Allison: Spending time cheering on my four athletic kids and coach husband. I am also a runner and try and get out as much as possible to “get away” from my loud house. I am a volunteer outside of NephCure as well, and because of that, I can truly thank our volunteers for their passion, expertise and hours they dedicate to this cause, to NephCure. I spend my days thanking people. It’s priceless.
Advocating for Awareness: One Mother’s Quest to Save Her Daughter’s Life March 25, 2019 by Kylie Karley Kidney disease advocacy is something no parent plans to be exceptional at. In fact, kidney health wasn’t even a blip on Marlene Botta’s radar until her 14-year-old daughter, Jacqueline, was diagnosed with Nephrotic Syndrome on February 28, 2016. It’s a day Botta has a hard time describing. “My stomach just dropped to the floor, and I felt like throwing up. My first reaction was, ‘This is going to be bad,’” she said. After an original misdiagnosis and an entire week anxiously spent in the hospital, Jacqueline began taking steroids to try to treat her protein-spilling kidneys. “That was probably the most frightening and traumatic time in her life, because she blew up so big, so fast overnight. She didn’t want to go to school, she didn’t want anybody to see her,” Botta said. For six more months Jacqueline proceeded with high dosage steroids, however her body resisted the treatment. The Bottas ultimately made the decision to start a search for a different doctor; one who had dealt with and specialized in Nephrotic Syndrome cases. “I was hysterical and desperate, and I felt like there was no urgency to find a cocktail of drugs that worked; that’s when I sent a crazy message to NephCure,” Botta said. With support from NephCure Kidney International, Botta found an alternative doctor and connected with other patient families in her local community. Jacqueline tried many other drugs, including tacrolimus and prednisone, all of which were unsuccessful in slowing her declining kidneys. The next step: clinical trials. “Although the drugs ended up not really help Jacqueline, the trial that we were in was comprehensive and probably the best care that she could’ve gotten. The amount of care that you get in a trial is totally different than what you would get in a regular visit. With a regular care plan you see your nephrologist every 2-3 months, in a drug trial you’re seeing them every week or every other week,” Botta described. While Jacqueline’s first biopsy displayed Minimal Change Disease, her second biopsy proved otherwise. It wasn’t until June 2018 that she was officially diagnosed with focal segmental glomerulosclerosis (FSGS). “And I just cried and cried again,” Botta wept. The change in diagnosis also caused a change in applicable clinical trials. Jacqueline switched into the Sparsentan study, which offered glimmers of hope and simultaneously brought along a new set of challenges. Amid the fog of the doctor’s appointments, hospital visits, and medications, Botta immediately knew what she was called to do. “I couldn’t sleep one night, and I just said, ‘There’s got to be a better way.’ So, I got in touch with other families, saw there was a walk, and wanted to get involved so that I wasn’t so alone,” Botta recalled. It was at that first walk on Long Island, New York where Botta truly caught the ‘Advocacy bug’. She wanted to make the walk even better and her involvement quickly became a lifestyle. Botta plastered her entire town with pictures and posters, sharing her daughter’s story with anyone who would listen. She quickly was asked to take on the Chairperson role of the Long Island Walk. Her involvement the past several years promptly increased the overall fundraising efforts—last year the Long Island Walk raised $61,000. “My first year as Chairperson, I invited a bunch of elected officials to the walk. Every single one of them came and every single one of them knew someone at the walk,” Botta said. In her experience, getting your story out is the key when it comes to advocacy. To make change at a state level, Botta stresses the importance of working with your elected officials. “Contact your elected officials, meet with them personally. Take your speaking points with you, but always remember your family’s story is what they want to hear. Be persistent. If you get a ‘no,’ go back until you get a ‘yes.’ Don’t let anybody tell you that you can’t do it,” she advised. Botta had previous work experience in public relations at the state capital in Albany, which provided her a wealth of knowledge when it came to understanding who she needed to speak with in order to get an entire Day of Awareness for the state of New York. She worked with various elected officials for roughly two years to secure a proclamation that was passed first in the State Assembly. This year that proclamation was presented to the Senate, officially making March 27, 2019 Nephrotic Syndrome Awareness Day in New York state. Because of this work, New York State Senator Shelley Mayer has now offered to partner with the other elected officials to create a permanent resolution, in the near future, that would make March 27th Nephrotic Syndrome Awareness Day every year. Another recent accomplishment was starting the first ever Rare Disease Day at the New York Police Department Headquarters in Manhattan, attended by more than 20 rare disease groups and 300 patient advocates. Botta’s husband, Anthony, has worked for the NYPD for 17 years, but it wasn’t until October 2018 that she got the idea to include the entire department in a day of awareness. “The pink was overwhelming,” Botta recalled. The idea sparked after she noticed an abundance of pink breast cancer awareness ribbons plastered on police cars and the building—it lit a fire inside her. Through her diligence and close work with the NYPD Deputy Commissioner of Administration, she was able to start Rare Disease Day; an afternoon where families within the department who have children with rare diseases come together and learn more about each other and the resources available to help them. “It really is all about persistence, persistence, persistence. Never let anyone tell you it can’t be done,” Botta shared. As far as future projects and goals, Botta has been named the NephCure Community Lead in the New York region. She’ll be responsible for overseeing all events, welcoming new patients, overseeing advocacy, and more. Botta is also working towards getting a documentary made to share her story and overall mission. “It’s on the horizon, 2020. Even if I have to mortgage my house,” Botta joked. Below is a list of helpful tips curated by Botta to help you reach out and provide change in your community:
Tackling Chronic Disease with Medication and Unwavering Hope: Geeta Moreau’s Journey March 8, 2019 by Kylie Karley Geeta Moreau first went into kidney failure in 2005—an extremely tough situation to handle for anyone, but especially for an independent and successful woman like herself. Throughout her triumphs and struggles, Geeta has remained true to her core of positivity and optimism. We asked Geeta to share her experiences and inspirational story to help others who may find themselves in similar situations. If there ever was a time to look within for hope and sheer will to live, it’s when I relapsed with Focal Segmental Glomerulosclerosis (FSGS) last summer. It was May 1, 2018, two weeks before Mother’s Day. I feared a relapse may happen considering I was recovering from a divorce and rebuilding a new chapter in me and my son’s life. And there it was fear realized—I thought about who would take care of my son. It was different the first time I went through kidney issues, but one symptom was the same: the edema. The sudden swelling to indicate the something was happening, 30 pounds of edema. I went through stage four kidney failure in September 2005. I lost all independence to care for myself. My lesson to learn and allow loved ones to care for me was humbling and uncomfortable at times. I didn’t know how to handle all the side effects from my various medications. I also didn’t socialize much because I was so acute and didn’t want people to see me sick. I wanted to be remembered a certain way. This time around I’m working hard, taking care of my son and myself, I’m working toward a better life. Although FSGS is not as acute as kidney failure, other factors come to mind: parenting, career, but most of all health. I’m a single mother and want to see my son grow up. I’m continuing to work in my field through my chronic illness, although it is a struggle at certain times. Another thing I encountered was a sudden onset of 30 pounds of edema. The physical weight was also a metaphor for the weight of the stress I was feeling. I had no idea how or what I was going to do, but I knew it was going to be looking forward to things in the future to stay alive. It was survival mode. I had read somewhere that when you’re sick make future plans, it helps the mind to look forward to something and betters your chance for survival. The most cathartic part of this process is I’m starting to share my story in hopes of helping others gain hope and resilience to fight for their own health. It’s difficult to share my personal experience of living with FSGS. I’ve always been a friendly person, but remain fiercely private at the same time. Anything I could do to keep a glimpse of optimism, I do it. Meditation, drawing, practicing guitar and music. My son’s a great reminder of the art of play and playing in the present is such a healer. I’m reminded daily the possibilities of the impossible. I also know how to better manage my own self-care, how to handle the side effects from the medications, but back in 2005 I was in a much more acute state. I went into a full remission in 2007/2008. I was on high doses of prednisone, cyclosporine, and other medications to keep my body systems in check as everything is affected when my kidneys were not functioning correctly. To say it’s difficult physically and mentally is an understatement. Life does have its consequences. The medications that saved my kidneys affected my bones. In 2009, I was diagnosed with avascular necrosis of the hip, bilateral in 2010. Bone death. I walked with a cane for two years. Lived with chronic pain and limited mobility. In 2011, I got married, honeymooned and had hip replacement surgery. Then it was ‘getting my health back’ mode. I wanted to get off the pain medications to try to have a baby. I was hopeful yet realistic. I did get pregnant and had a miscarriage in the 9th week in 2013. Though I had read it was common for that to occur, it was a sad time that I worked through. I kept thinking that my body is receptive to conceiving. Within two months I was pregnant again, and I had a healthy pregnancy. In November 2014, I delivered a beautiful baby boy naturally with a hip replacement. I thought a c-section was inevitable, but my perinatologist advised me to be in good shape, pay attention to my body and well-being. Motherhood is the best thing that ever happened to me; it reminds me every day how life is possible. I did have a ten-year remission after all. These recent days, my kidneys are responding to the medications within nine months. I have not been on dialysis or had a transplant. I’ve always felt fortunate to be able to tackle this chronic disease with medications. Acupuncture helps me tremendously, balancing my mind and body. Optimism has always been in my nature, even before I fell ill. But when I got sick and lost all independence to work and care for myself, optimism became a practice. It was a matter of survival, life or death. My tendency is to look forward. I don’t ask why this chronic condition is happening, rather I channel the energy to eat right, exercise, and work toward gaining kidney health. I do what I can control, and the rest I keep the faith and spirit of positivity close to my heart. It’s not easy, but it’s a will to not only survive, but to thrive. I hope to be in a full remission again. I remain optimistic because I’m grateful to be alive. – Geeta Moreau
NephCure Kidney International Announces Addition of Three New Members to its Scientific Advisory Board March 8, 2019 by Kylie Karley (KING OF PRUSSIA, PA – MARCH 8, 2019) NephCure Kidney International (NephCure) is proud to announce the addition of three new members to its Scientific Advisory Board (SAB). Joining the distinguished SAB are Laura Barisoni, MD; Alessia Fornoni, MD, PhD; and Marva Moxey-Mims, MD. “Our Scientific Advisory Board is made up of leading basic science and translational researchers, all of whom have made great strides in pushing glomerular disease research forward. We are thrilled to welcome Drs. Barisoni, Fornoni and Moxey-Mims to this esteemed group,” Irving Smokler, PhD, Board President of NephCure announced. NephCure’s CEO, Joshua Tarnoff, added, “All three of our newest Scientific Advisory Board members bring diverse expertise and experiences that embody the spirit of our NephCure community. We are very fortunate to welcome them to our team, as 2019 is a pivotal year for clinical research and bringing forward new and effective treatments.” The chairman of NephCure’s SAB, Martin Pollack, MD, also congratulated and welcomed the new members, “We are thrilled to welcome Drs. Fornoni, Barisoni, and Moxey-Mims to the Scientific Advisory Board. All three are outstanding and dedicated physician-investigators who are committed to improving our ability to care for individuals with glomerular disease.” Laura Barisoni, MD Laura Barisoni, MD is currently a Professor of Pathology and Medicine at Duke University Medical School. She is an accomplished diagnostic pathologist and an internationally recognized expert in the field of digital nephropathology and the use of digital image recognition as a diagnostic tool, particularly for glomerular diseases. Dr. Barisoni is the current President of the Renal Pathology Society, where she previously served for four years on the Board of Directors. Actively involved in NIH-sponsored grants on podocytopathies and clinical trials on Nephrotic Syndrome and Fabry’s disease, Dr. Barisoni also has remarkable teaching experience at numerous national and international courses in renal pathology. Alessia Fornoni, MD, PhD Alessia Fornoni, MD, PhD is a tenured Professor of Medicine and Molecular and Cellular Pharmacology at the University of Miami Miller School of Medicine. She is also the Chief of the Katz Family Division of Nephrology and Hypertension and serves as Director and Chair of the Peggy and Harold Katz Drug Discovery Center. Dr. Fornoni’s lab was the first to report an important role of sphingolipids and cholesterol in the modulation of podocyte function in focal segmental glomerulosclerosis. Her internationally recognized research findings, which are now being translated into humans with novel therapeutic applications, have challenged existing paradigms. Dr. Fornoni’s vision is one that brings industry, investors and not-for-profit organizations around the table with the intent to match science with innovation and patients’ motivation to find a cure for kidney diseases. Marva Moxey-Mims, MD Marva Moxey-Mims, MD is a Professor of Pediatrics at the George Washington School of Medicine and the Chief of the Division of Nephrology at Children’s National Health System in Washington, DC, where her focus is on clinical research to improve the care of children with kidney disease. She was most recently at the National Institute of Diabetes, and Digestive, and Kidney Diseases at the National Institutes of Health in Bethesda, MD, where she served as deputy director for clinical science in the Division of Kidney, Urologic and Hematologic Diseases. Two of the studies Dr. Moxey-Mims initiated are the ongoing Chronic Kidney Disease in Children (CKiD) study, the largest study of pediatric chronic kidney disease ever conducted in North America, and the Randomized Intervention for Children with Vesicoureteral Reflux (RIVUR) trial, the primary results of which were published in the New England Journal of Medicine. NephCure Kidney International’s Scientific Advisory Board includes: Gerald Appel, MD, PhD Daniel C. Cattran, MD Friedhelm Hildebrandt, MD Lawrence B. Holzman, MD Frederick Kaskel, MD, PhD Jeffrey B. Kopp, MD Matthias Kretzler, MD Peter Mundel, MD Martin R. Pollak, MD Jochen Reiser, MD, PhD Andrey S. Shaw, MD Karl Tryggvason, MD, PhD Roger Wiggins, MB, BChir *Michelle P. Winn, MD Posthumous Emeritus NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Specifically, NephCure is focused on glomerular diseases such as: FSGS, IgA Nephropathy, Minimal Change Disease, Membranous Nephropathy, C3 Glomerulopathy, and Membranoproliferative Glomerulonephritis. NephCure is headquartered in King of Prussia, Pennsylvania. For more information about the organization, visit NephCure.org or call 1-866-637-4287.