NephCure Applauds the Introduction of Federal Legislation to Improve Kidney Patient Access to Early Interventions, Improved Diagnostics & Access to Treatments December 15, 2023 by Hillary Kent Washington, D.C., December 15, 2023 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today applauded the introduction of the New Era of Preventing End-Stage Kidney Disease Act H.R.6790 in the U.S. House of Representatives. The legislation is championed by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL) and represents a crucial step forward in our nation’s efforts to address rare kidney diseases through research, better diagnostics, and physician and patient education. The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”) is bipartisan federal legislation that will improve outcomes and quality of life for hundreds of thousands of Americans living with rare kidney disease (RKD) and their families. This legislation will support early intervention, improve access to better treatments, and reduce the physical, psychological, social, and economic impact of RKD through research, better diagnostics, and physician and patient education. The legislation will help mitigate the burden of rare kidney diseases on patients, families, and the health care system, laying the foundation for a new paradigm of proactive and effective kidney disease care. “Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said Congressman Gus Bilirakis. “Through the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts, we will empower providers to better identify the signs and symptoms of rare kidney disease, which will lead to improved treatment options and better patient outcomes.” “Far too many people living with rare kidney disease have trouble finding specialized care providers. Increasing awareness and education is crucial to caring for rare kidney disease patients, which is why I’m so proud to introduce the New Era For Preventing End Stage Kidney Disease Act. This legislation will make critical improvements to the way patients with rare kidney disease, especially those in underserved communities, access and receive care,” said Rep. Sewell. “NephCure commends Congressman Gus Bilirakis (R-FL) and Congresswoman Terri Sewell (D-AL) for championing the New Era of Preventing End-Stage Kidney Disease Act and efforts to see a future in which improved diagnoses, access to treatments, and patient empowerment converge to reshape the trajectory of rare kidney diseases,” said NephCureCEO Joshua Tarnoff. “This bill can change how we take care of rare kidney disease patients through earlier detection and access to the right treatments, providing rare kidney disease education opportunities to doctors and patients, and allocating money for research. We are proud of the essential contributions the rare kidney disease community played in the development and introduction of the New Era of Preventing End-Stage Kidney Disease Act. We are committed to continue working alongside Congressman Bilirakis and Congresswoman Sewell to pass this important legislation in the 118th Congress.” The New Era Act: A New Approach to Improve the State of Kidney Care Reduce Kidney Failure. Mandates the U.S. Department of Health & Human Services (HHS) to evaluate treatment methods that would delay or eliminate the need for dialysis and transplant and provide legislative recommendations to Congress to support its findings. Close the Gap for Underserved Communities. Directs HHS to make recommendations that would improve care in communities that have disproportionate rates of RKD. HHS will study a range of issues relating to early intervention, testing, and treatment, including access to kidney doctors, patient trust of their health care provider, and the utility, impact, and barriers associated with genetic testing. Advance Research and Standard of Care. Creates regional Centers of Excellence on Rare Kidney Disease Research at the National Institutes of Health (NIH) which will support research, public awareness, and resources which could lead to innovative, less invasive treatments and possibly a cure for rare kidney diseases. Enhance Provider Education. Establishes nephrology fellowships and provides continuing education and primary care training on RKD diagnoses and treatment. This training will enhance physician knowledge and increase the number of experts available to patients. Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey. Read the full text of H.R.6790 by clicking here. NephCure encourages all of its community members to take action now by urging their Members of Congress to support the New Era legislation. By the Numbers: The State of Kidney Care Top 10 leading causes of death in the U.S. include kidney disease. One in seven adults live with chronic kidney disease. Nine in ten adults with chronic kidney disease are unaware of their condition. The incidence of Focal segmental glomerulosclerosis (FSGS), a rare kidney disease, is around 5 times higher in Black patients when compared to white patients. The annual cost for Medicare to treat kidney failure is $124.5 billion, which is driven by rare and chronic kidney disease. Patients on dialysis spend around 12 hours a week connected to medical devices. About NephCure NephCure is a leading national patient advocacy organization dedicated to empowering people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney disease.
NephCure’s Patient Navigation Services: Meet Montrez Lucas, LCSW February 10, 2023 by Des Lalonde We are very proud to introduce the NephCure Patient Navigation Program, a key component in helping the rare kidney disease (RKD) community get the answers and care they need, and Montrez Lucas, LCSW, is leading the way. Montrez Lucas, Associate Director of Patient Navigation Montrez, NephCure’s Associate Director of Patient Navigation, is a licensed social worker who helps patients, caregivers, and care partners navigate through healthcare services and systems. Before coming to NephCure, Montrez led a team of social workers at Emory University Hospital in Atlanta. In his role, Montrez offers a resources, guidance, and hope to our community. By offering practical support as well as building helpful and lasting relationships, he ensures RKD patients and families have help navigating the uncertain rare kidney disease journey. Learn more about our Patient Navigation Program in this Q&A with Montrez. What is patient navigation? ML: Patient navigation is used to help patients and care partners navigate through healthcare services and identify problems they may face. These services offer helpful resources they may not have immediate access to, reduce health disparities in the community, and empower patients to receive the care they deserve, while receiving support from someone they can trust. How does this program serve caregivers and partners? ML: The program serves caregivers and partners by giving them access to resources to pass along to their loved ones and providing lasting support in a timely manner to assure they can continue to provide the best care to the patient. It is my duty to keep care partners up to date on how to best serve patients and guiding them to better patient care. The patient journey is important, but care partners serve an important role in every patient’s life. Why are patient relationships important to you? ML: I build relationships with patients and families to help guide them and solve the problems they are facing. Each patient is just as important as the next, which is why supporting them through the process of navigating healthcare systems and their general issues is vital. Building relationships with patients provides them the support they need to promote positive health behaviors and establishes trust. Patients and caregivers deserve to have a great relationship with someone they can rely on to give them the best resources, bring them closer to their goals, and resolve the issues they have. How can these navigation services help patients and families? ML: Navigating through the disease journey can be stressful, especially when conquering it alone. Patients should use these resources if they find themselves needing support. We will be able to provide patients with necessary resources for their journey, and connect them with the right tools, including informative events, webinars, support groups, and more. They’ll also receive assistance in healthcare access, school support services, medication assistance programs, and access to experts that can put them on the right track. The goal is to get to the patient before it’s too late. Learn more about NephCure’s Patient Navigation Program and connect with Montrez here.
Dr. Peter Mundel, Kidney Disease Researcher May 31, 2017 by Lauren Eva Why I Do What I Do: Spotlight on Dr. Peter Mundel, Kidney Disease Researcher Dr. Peter Mundel is a physician-scientist who has spent the past 30 years studying kidney cells called podocytes, which are specialized cells with a central role in glomerular diseases like FSGS. Dr. Mundel has been an esteemed member of NephCure’s Scientific Advisory Board since 2007, and in 2011, NephCure helped fund his work by providing him with a bridge grant. A major focus of his work has been the development of new, targeted treatments for patients with FSGS and other glomerular diseases. Last year, he left his professorship at Harvard Medical School/Massachusetts General Hospital to lead the research of a new start-up company called Goldfinch Bio, a biotechnology company that is singularly focused on discovering and developing precision therapies for kidney disease. We spoke with Dr. Mundel about his work and what inspired him to leave academia to create new treatments for people living with FSGS and Nephrotic Syndrome. NKI: How did you first become interested in studying the kidney? What is it about glomerular diseases specifically that interests you? Dr. Peter Mundel Dr. Mundel: I first became interested in studying the kidney when I was in medical school, back in Germany in the late ‘80’s. I had joined the laboratory of Dr. Wilhelm Kriz, who was one of the leading investigators in the field. At that time, there was nothing known about podocytes. They were considered passive bystanders. Everybody was thinking about mesangial cells and their role in the pathogenesis of kidney disease. So, I saw an opportunity and I entered the field and started to work on podocytes, and that’s what I focused on for 30 years since then: I got into the biology of these cells, learned about their function in health and disease, and then later of course I was trying to find podocyte-targeted therapies. But it all started 30 years ago in medical school in Germany. I still remember how I would sit with Professor Kriz in his office and we would say “one day we should develop podocyte protective medicines.” That’s what we said, and 30 years later, we’re doing it! NKI: Could you tell us about your discovery process of deciding to study a new drug? I am thinking specifically of abatacept because many people in our community are familiar with it, and I know you were instrumental in discovering its use in treating Nephrotic Syndrome. Dr. Mundel: We can definitely talk about the abatacept story, because it has good parallels, and it also helps explain what brought me to Goldfinch Bio. We identified B7-1/CD80 in podocytes, way back at my lab in Heidelberg, using differential Display PCR, a technique that allows you to monitor changes in gene expression between normal and diseased cells. We had our first paper on B7-1 in 2004 in The Journal of Clinical Investigation, where we showed that B7-1/CD80 has a role in podocytes in proteinuria, in addition to its role in the immune system. We studied the role of B7-1/CD80 in podocytes for another for 10 years, and then we began studying the use of abatacept [which targets CD80/B-71] in patients. What’s interesting with abatacept is that we now know that there is a subgroup of patients that respond well to this drug. Going forward, the challenge will be in identifying with precision who are these patients for whom it will work. There is no silver bullet: not every patient with Nephrotic Syndrome and FSGS will respond to the same drug. Some people will respond to abatacept and some people will respond to some as-yet-unidentified new drug. We will need to take a precision medicine approach. Knowing this, we will now need to define patients molecularly—not by saying they have FSGS or proteinuria, but by saying they have proteinuria driven by CD80/B7-1, or by protein ‘X’ or protein ‘Y’. That is exactly what our colleagues in oncology do: when you have a mutation in BRAF [which causes, for example, skin cancer or melanoma], you get a BRAF blocker for your melanoma. At Goldfinch, we are basically bringing the oncology playbook to the kidney space. We need to figure out who will respond to which drug, and we will need to use people’s genetics to identify targets for new, specific drugs. I think abatacept was the first stop at personalized medicine. When our paper [on abatacept] came out, there was an accompanying editorial by Börje Harraldsson that said exactly that—“A New Era of Podocyte-Targeted Therapy.” There is a trial going on with abatacept right now. I’m very pleased about that, because if you see in our original New England Journal of Medicine (NEJM) paper, patient number 5, this woman was on and off all kinds of drugs. But abatacept works so well for her that she is now in complete remission. And now, in her late 20’s, for the first time she has a good life; she enjoys her life. She doesn’t go from medicines with side effects to being hospitalized as she used to. I think this is a great success, because this is an idea that started in my lab almost 20 years ago. Because of this work, there is someone who really feels good and has a good life. And so as I said, the challenge now is to find all those patients who will respond to each of our precision treatments. NKI: Wow. That must make you feel incredible to know that years and years of your research led to this woman finally feeling like she could have a good life. Dr. Mundel: It’s a humbling experience. It’s very humbling that I had the privilege to have an impact on someone’s life. Because you see, I’m an MD by training, but after medical school I have only done research. But indirectly I act like a physician—I don’t treat her myself, but because of my work, she now has a better life, and I’m very happy for her. For all of our patients at NephCure that we care about with FSGS and Nephrotic Syndrome, I think this is a beacon of hope. For some of them [abatacept] will work too, and for others we will now find new drugs. But it clearly shows that the overall idea of finding podocyte protective drugs is a good idea, and it can work. NKI: So in the future, how would what you’re describing work? Would patients come in to their clinician and have gene mapping done, and when the results come in, their clinician would know exactly how to treat them? Dr. Mundel: That is basically the end goal. At Goldfinch, we are building a patient registry where we will sequence thousands of patients with FSGS. This will allow us to stratify patients, so when we have a drug that we know will work for a certain pathway or mutation, we will be able to select patients who can benefit from this drug. We will be able to say, “You have a mutation in protein ‘X’, so we are giving you a drug correcting the effects of protein ‘X’ mutation.” That’s the targeted approach that we’re talking about when we refer to precision medicine. At the same time, we need to identify more causes of FSGS. The work done by Dr. Martin Pollak and Dr. Friedhelm Hildebrandt has identified a lot of these genes, and there are even more to be found. What their work shows is that there is a genetic underpinning of FSGS. At Goldfinch, we will continue that work and work closely with many academic collaborators. So to answer your question more directly, down the road what you described is exactly what we are going to bring to patients with kidney diseases. At some point, the patient comes in and they have proteinuria, and their doctor will do a genetic test. Right now, we can do it for about 70 or 80 genes [that are associated with FSGS and Nephrotic Syndrome], somewhere in that ballpark. Down the road, there may be hundreds, and patients will be tested for them. And we will have different medicines, so based on the patient’s mutation, we will be able to give them a specific treatment. We will no longer give patients nonspecific steroids or cyclosporine, but instead give them a targeted medicine because we will understand exactly what’s causing the disease. That’s what we want to do at Goldfinch—bring this personalized medicine to patients with FSGS. NKI: Right, and that way they’re not wasting time cycling through drugs that aren’t working, and in the meantime, not just not having a very great life, but also heading towards end stage kidney disease. That will save a lot of time. Dr. Mundel: Exactly. That’s the other goal—we want to prevent patients with FSGS to progress to end stage kidney disease and from going on to dialysis. At Goldfinch, our goal is to prevent people from going on to dialysis or needing a transplant—to stop the disease in a specific way by addressing the root cause. NKI: This is fascinating. And before you mentioned Dr. Pollak and Dr. Hildebrandt’s work, which has been funded in part by NephCure, I was going to refer to it and say, it’s really interesting from an outsider’s view how all this research is culminating: the genetic research, and drug discovery research, and podocyte research. It seems like it’s finally all coming together. Dr. Mundel: Oh, absolutely. Let me give you a prime example. My own work has been focused on the podocyte actin cytoskeleton. Independently, over the last five or six years, geneticists identified several FSGS causing mutations affecting the podocyte cytoskeleton. We now understand the genetics of the podocyte cytoskeleton, and this dovetails with what we understand about the biology. We are living in a time when genetics and biology are coming together. When you have both, then you can have the precision and the tools to make a targeted therapy. NKI: Wow, what an exciting time to be a glomerular disease researcher. That excitement and that feeling of being just around the corner, that must have been part of what led you to leave academia. You had a very distinguished position at Harvard, and you left it to join Goldfinch Bio. That speaks volumes of your confidence in it. Dr. Mundel: It does, and I believe that what we’re doing is the right thing. I’ll tell you, when I first came to Harvard in 2010, I thought I would continue doing academic research until I die in my office. And then this amazing opportunity came. As we discussed, it’s the dovetailing of the biology and the genetics, but also the work done by Dr. Melissa Little and by Dr. Joseph Bonventre, who’s one of our founders. They showed that it is possible to make kidney organoids, which are “kidneys in a dish”. So now we have the ability to study human kidney disease, if you will, in a dish. There’s also been an explosion of technical data, where analyzing the genetic data is becoming cheaper and cheaper. And cloud computing has arrived, which we didn’t have five years ago. Now we have all the computational tools, the biological tools, the genetic tools to bring such a push to this field. It’s absolutely exciting. In 2008 we had a manuscript where we showed how cyclosporine, which is clinically used to treat NS, works on podocytes. Then we had the NEJM paper where we repurposed the drug abatacept from Rheumatoid Arthritis to patients with FSGS. Joining Goldfinch was the next logical step. I want to make new drugs targeting the causes of the diseases, and I think Goldfinch is the perfect place to do it. And as you said my confidence is reflected in the fact that I have left Harvard. I’m not on a leave of absence, I have not kept my professorship; I have shut down my laboratory and returned all my grants and funding. I want to focus on Goldfinch now, because by focusing on it we can do our best. I wholeheartedly believe in what we are doing here, and I wholeheartedly believe that we will be successful in helping our patients. They really need new treatments. There are no drugs approved in the US to treat FSGS, and the last approved therapy to treat proteinuric kidney disease occurred over 20 years ago. It is pretty much the same since I graduated from medical school in 1991 . It’s time to bring a renaissance and provide new therapies for our patients. For me there is no better mission than doing that. The goldfinch was a prominent symbol during the Renaissance, and signified hope and a new beginning. We chose to name our company Goldfinch Bio because we feel that the vision of our company is to lead a renaissance in developing new therapies for patients with kidney disease. I think it’s a sign of hope and optimism that there’s a new chapter, a new age that we are ushering in and that we want to lead. Because the patients deserve that we find good therapies for them. I’m proud to be part of the team here at Goldfinch that will do exactly that: find new therapies for patients with kidney disease. For me there’s nothing better that I can think of doing with my time. We were thrilled to speak with Dr. Mundel and learn more about his latest venture. Researchers like Dr. Mundel and many others provide us with real hope and conviction that we will one day find a cure for the diseases that cause FSGS and Nephrotic Syndrome. Since 1999, NephCure has helped provide funding for more than 50 research projects to learn more about causes and potential cures for the diseases that cause Nephrotic Syndrome. Today, these researchers are closer than ever to moving new treatments from the laboratory to the pharmacy shelf. Thank you for your commitment to this work, Dr. Mundel, and all who have dedicated their lives to eliminating these rare and chronic diseases! Dr. Peter Mundel is a past awardee of the esteemed American Society of Nephrology Young Investigator Award and a distinguished investigator who lead the Mundel Laboratory at Massachusetts General Hospital and Harvard Medical School from 2010 to 2016. In April 2014, Dr. Mundel received, jointly with Dr. Anna Greka, Renal Division, Brigham and Women’s Hospital, a 2014 Top 10 Clinical Research Outstanding Achievement Award from the Clinical Research Forum. In 2013, he and distinguished colleagues published the first targeted treatment for proteinuric kidney disease in the New England Journal of Medicine. (Abatacept in B-71; N Engl J Med 2013; 369:2416-2423). The associated editorial in the NEJM describes their discovery as a “New Era of Podocyte-Targeted Therapy for Proteinuric Kidney Disease.” Dr. Mundel attended medical school at the University of Heidelberg, Germany. He completed a Postdoctoral Research Fellowship in the program “Experimental Kidney and Circulation Research” at the University of Heidelberg, which was funded by the German Research Foundation. He is also the author or co-author of over 86 original research articles. Dr. Mundel’s research focus has been on the makeup and function of podocytes, key cells found in each of the one million separate filtration units packed into a single human kidney.
NephCure Accelerating Cures Institute: Worldwide Launch and US Expansion March 23, 2017 by Lauren Eva The NACI Network is expanding worldwide to speed more effective treatments to individuals with Nephrotic Syndrome Thanks to a significant funding contribution, we’re proud to announce that the NephCure Accelerating Cures Institute (NACI) Care Network is expanding. An investment from Pfizer’s Centers for Therapeutic Innovation (PFE) and Retrophin (RTRX) will help grow the network from 8 sites to 30 sites worldwide. For patients living with Nephrotic Syndrome, more NACI sites means greater access to specialized care and trial opportunities specific to their unique kidney condition. Equally important, a more robust Network gives families across the globe a hub for community building and support at their individual care sites. NephCure Accelerating Cures Institute Global Trials Network The NACI story began in 2014, when leaders from NephCure Kidney International sought advice from leading medical professionals about ways to get better treatment options to patients faster. That following year, NKI launched NACI in partnership with the University of Michigan. Today, NACI is co-led by veteran representatives from NKI in suburban Philadelphia and an expert team from the University of Michigan, Ann Arbor. NephCure Accelerating Cures Institute United States Trials Network To read more about NACI, you can view the full press release here, or visit the NACI website at www.nephcureaci.org. If you have any questions or want to learn more, please send us an email at info@nephcure.org, and we will direct your message to the appropriate party.
NephCure Funded Research: Dr. Martin Pollak’s Lab January 30, 2017 by Kylie Karley NephCure Funded Research: Dr. Martin Pollak’s Lab Through generous donations from the NephCure Kidney International community, NephCure has been able to support Dr. Martin Pollak’s kidney disease research at Beth Israel Deaconess Medical Center (a Harvard Medical School teaching hospital) since 2007. Dr. Pollak’s lab works on identifying genetic causes of kidney diseases, like FSGS. They have made some very exciting progress over the past few years, leading to Dr. Pollak’s election into the prestigious National Academy of Sciences in 2014. Dr. Pollak’s research has identified that two common variations in the apolipoprotein L1 (APOL1) gene impart up to a ten-fold increased susceptibility to FSGS among African Americans. African Americans and others of recent African ancestry suffer disproportionately from chronic kidney disease: although they make up 13% of the U.S. population, they represent 35% of all individuals on dialysis. Other researchers have calculated that 1 in 8 African Americans are at risk for developing kidney disease due to APOL1—stark numbers that may indicate that some forms are FSGS would not be classified as a “rare disease.” But the research being done at Dr. Pollak’s lab may one day help prevent treat—and prevent—this disease from occurring. Dr. Pollak was recently featured in an article on SFGate.com as saying that “We want to put our own [kidney disease research] division out of business by preventing this disease to begin with.” We are thrilled to offer a “progress report” on this work directly from Dr. Pollak’s lab. We spoke recently with Andrea Knob, a genetic counselor, clinical research coordinator, and key player in Dr. Pollak’s study, who gave us some background on the work the study is doing, what we can expect from this lab in the future, and how you can get involved in this research yourself. Q: What is the goal of the research being done in Dr. Pollak’s lab? Andrea: The purpose of our study is to learn more about the causes of kidney conditions including FSGS, Nephrotic syndrome, unexplained proteinuria, and renal failure by studying genetics. We identify and study genetic factors that may contribute to the development of these conditions. We hope that this will further the knowledge required for scientists to develop better treatments in the future. Q: What is your role at Dr. Pollak’s lab? Andrea: I am the clinical research coordinator for Dr. Pollak’s lab. With my background in genetic counseling, I help patients and families navigate the research process, assist them in documenting their personal and family health histories, and serve as a resource for any questions surrounding genetics and research. I am the liaison between our patients/families and our physicians/scientists. Q: What do you enjoy about CKD research? Andrea: Every person and family has a story to share, and this information is so valuable and so important. It is amazing to witness this generosity, and to be a part of a team that is so dedicated to making progress in this field. Research answers the questions that otherwise would be left unknown, and that in turn provides hope. Q: What is APOL1? Andrea: APOL1 is one of several genes that we study in the Pollak lab. Variations in this gene have been found to confer resistance to trypanosomiasis, a serious disease in some African regions, and as such these variations have risen in frequency in parts of Africa. We are investigating how these gene variants contribute to kidney disease in persons of African ancestry. Q: Why did the lab decide to focus on APOL1? Andrea: APOL1 is one of several genes that we study as we try to learn more about the causes of FSGS, Nephrotic syndrome, and related conditions in patients and families. Our lab’s interest in the genetics of FSGS led us to explore the basis of the high rate of FSGS in persons of African ancestry. Certain specific variations in the APOL1 gene contribute to this disparity. Q: What impact can diagnosing an APOL1 mutation have on treatments for patients? Andrea: We need to learn more about genes, including APOL1, that may contribute to the development of kidney disease. (We also think there are more to be discovered!) Diagnosing a gene mutation helps doctors determine who might be at increased risk of developing kidney disease. While it may not affect the treatment for patients at this time, the goal is to acquire the information we need about these gene variations in order to develop better treatments in the future. Q: What is involved for patients in this study? Andrea: Participation involves a questionnaire, a saliva sample, and a urine sample (if possible) that can be given from home. (If participants prefer to give a blood sample instead of a saliva sample we can help arrange this.) Q: Who can participate in this study? Andrea: • Anyone with FSGS, Nephrotic syndrome, or unexplained proteinuria • Anyone with a family member who has FSGS, Nephrotic syndrome, or unexplained proteinuria • Anyone with African ethnicity with non diabetic kidney failure • Any healthy individual without kidney disease Andrea Knob – Genetic Counselor and Study Coordinator for Dr. Pollak’s study Q: How do I get more information about the study? Contact Andrea Knob with any study related questions by phone at 617-667-0467 or by email at aknob@bidmc.harvard.edu. You can also read more about the research study by clicking here.
Dr. Anna Greka, Kidney Researcher at Harvard, Receives PECASE from President January 30, 2017 by Kylie Karley Dr. Anna Greka, Kidney Researcher at Harvard, Receives PECASE from President In early January, President Obama honored 102 early career scientists with a Presidential Early Career Award for Science and Engineering. It is considered the highest honor for scientists that are in the dawn of their career—the award is given to federally funded researchers that have done exceptional work in advancing their field. Dr. Anna Greka, long-time friend of NephCure and kidney disease researcher at Harvard University, was a recipient of this award. Pres. Obama praised Greka and the other recipients, saying, “These innovators are working to help keep the United States on the cutting edge, showing that Federal investments in science lead to advancements that expand our knowledge of the world around us and contribute to our economy.” Dr. Greka received a Young Investigator Grant from NephCure in 2008, and has continued to support NS patients and families with her hard work and dedication to research. Her research lab focuses on the development of targeted therapies to treat kidney diseases like FSGS and MCD. Dr. Greka also founded the Glom-NExT conference to bring brilliant minds together and focus exclusively on finding therapies for these kidney diseases. She will also be collaborating with NephCure to host a Regional Symposium in the spring. You can read more about Dr. Greka’s lab and her work here – http://grekalab.bwh.harvard.edu You can read the full statement from the White House about the PECASE awards here.
NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness March 3, 2016 by Lauren Eva FOR IMMEDIATE RELEASE Contact Information: NephCure Kidney International Erin Russell erussell@nephcure.org NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness {Melville, NY, March 2, 2016} – NephCure Kidney International and Sydney Levine, from Melville , NY, will be MARCHing to Awareness for the month of March. Sydney, 15, rang the closing bell at the NYSE yesterday to kick off her month long drive to promnote awareness of chronic kidney disease. Sydney’s brother, Matthew, 12, has Focal segmental glomerulosclerosis (FSGS), a rare kidney disease for which there is no cure. MARCHing to Awareness is a campaign aimed at promoting f National Kidney Disease Awareness Month and will target a different activity each day of the month. Yesterday, March 1, Sydney spoke in front of the Suffolk County Legislature and rang the NYSE closing bell. “Academics aside, I wanted to express my admiration for Matthew in the way he conducts himself. In spite of his condition, his positive attitude never waivers. I cannot remember the last time I didn’t see him with a smile on his face. Many kids would use his condition as a crutch or an excuse; he appears to use it as a motivator. I, for one, am inspired by this. I hope this month is just a start to finding a permanent solution to what Matthew and other kids like him are going through,” Chris Regini, Matthew and Sydney’s science teacher. For more information, please visit www.nephcure.org or search #KidneyAwarenessMonth NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure. ### [Best_Wordpress_Gallery id=”10″ gal_title=”#KidneyMonthAwareness”]
2015 Countdown to a Cure – THANK YOU! November 20, 2015 by Lauren Eva We’ve said “hello” and “goodbye” to another Countdown to a Cure… From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt speeches delivered by NephCure’s beloved family, the Jones’ and honoree, Olympic athlete Aries Merritt, this event was truly the “Chance of a Lifetime” to make a difference in the fight against Nephrotic Syndrome. The success of Countdown has always been measured by the generosity of the many hundreds in attendance who consistently show support for NephCure and this year, our expectations were overwhelmingly exceeded, for which we could not be more grateful. You are changing the story. Energies were high and attendees were excited, lighting the way for one of the most successful galas in NephCure history. “Fund a Cure” donations blew expectations out of the water, bidding was at a high and the second annual game of “heads or tails,” brought a touch of silliness to an evening surrounding a very serious cause. Emcee, Moody McCarthy, along with “Asbury Fever,” a Bruce Springsteen Tribute band, kept the party going all night long with many moments filled with laughter, dancing and mingling. As always, we want to thank the committee who worked so hard to put this event together and the volunteers who generously gave up their time to help this event flourish into a huge success. The 2015 New York Countdown to a Cure raised over $750,000 and many left the event feeling inspired and hopeful. Finally, thanks to YOU. To each of you reading this who’ve decided to join us in this fight. We can’t do this alone. We need you, we’re grateful for you and we thank you.
Watch the Demystifying Research Webinar! July 21, 2015 by Kylie Karley Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it! We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered! CLICK HERE TO WATCH THE WEBINAR
Check out our Peer to Peer Programs! March 19, 2015 by Lauren Eva One of the most important things we do at NephCure is connect people to others experiencing similar challenges of living with chronic kidney disease. Whether it be understanding the complexity of Nephrotic Syndrome/FSGS, the side effects of medications, frequent trips to the nephrologist or navigating your way through labs and diets, it can be incredibly overwhelming. At NephCure, we understand the value of connecting patients and caregivers with others to share experiences, frustrations and, better yet, good news! That’s why we’re expanding our Peer to Peer Support Program. In addition to our online support community, NephSpace, we offer our Patient to Patient Connections (P2PC) program. P2PC is a worldwide organized network of patients and caretakers whose lives have been affected by the diseases causing Nephrotic Syndrome and FSGS. It is designed to connect individuals via email or phone based upon any or all of the following: diagnosis, symptoms, and complications, age of individuals or sometimes specific geographical area. Our volunteer patient/caretaker ambassadors are committed to offering support and sharing their experiences with others who are facing similar challenges. You can learn more or be connected with a patient/caretaker ambassador here https://nephcure.org/?p=1390. We encourage you to take time to make connections with others in similar situations as we know you will benefit greatly from the support and sharing! If you are interested in becoming Volunteer Patient/Caretaker Ambassador please visit https://nephcure.org/get-involved/become-a-volunteer/ or contact Kelly Helm at khelm@nephcure.org.