Live Your Best Life With Nephrotic Syndrome! July 22, 2015 by Kylie Karley Coming this fall to a city near you: our freshened up patient workshop about “Living Your Best Life with Nephrotic Syndrome”! These FREE half-day seminars feature experts in Nephrotic Syndrome that can help you, and your family, live YOUR best life! Added bonus: a free kidney healthy lunch! Click on your city below to reserve your spot before it’s too late! Albuquerque, NM – Oct. 24 REGISTER Ann Arbor, MI – Oct. 24 REGISTER St. Louis, MO – Nov. 14 REGISTER Philadelphia, PA – Nov. 14 REGISTER RECENTLY COMPLETED WORKSHOPS: Charlotte, NC- Sept. 12 Cleveland, OH – Sept. 19 Austin, TX – Oct. 3 Baltimore, MD/ D.C. – Oct. 3
The Liposorber- An Innovative Device for FSGS July 22, 2015 by Kylie Karley Not too long ago, the Liposorber LA-15 System was approved by the FDA for use in pediatric FSGS patients that have tricky cases. This unique device offers a different type of treatment for patients: it cleans the blood of LDL’s, or the “bad cholesterol”. According to the FDA’s Press Announcement, “The device works by removing certain lipoproteins from the patient’s blood. The patient’s blood is first passed through a plasma filter where the blood cells are separated from plasma (the liquid component of the blood).” The Press Announcement goes on to cite studies that showed positive outcomes of patients that used the Liposorber System, including a study that showed patients excreted less protein after kidney transplant if they had treatment with the Liposorber System (compared to transplant patients that did not receive Liposorber treatment). Dr. Joshua J. Zaritsky, a pediatric nephrologist at Nemours/ Alfred I. DuPont Hospital in Wilmington, DE, believes in this innovative treatment option, saying, “I am hopeful we may be onto something with the Liposorber. I am beginning to get the feeling that the excess lipids we see in Nephrotic Syndrome are in themselves toxic to the kidney- this may explain why the machine works and provide another yet unexplored mechanism to help treat Nephrotic Syndrome/FSGS”. The Liposorber LA-15 System (is in) a post-approval study. If you are interested in learning more- be sure to ask your doctor and read more about the device HERE.
You’re Changing The Story- The New and Improved NKN! July 22, 2015 by Kylie Karley Announcing the new and improved NephCure Kidney Network (NKN) Patient Registry! Our updated survey helps you to tell your story, and it’s only a click away. www.nephcurekidneynetwork.org With just 30 minutes of your time you can become part of the movement that changes how research of chronic kidney diseases like FSGS and Nephrotic Syndrome is done. How? Step one is to join a patient-powered registry. NephCure has partnered with Arbor research to create a safe, secure, informed network for patients and their loved ones – just like you. We call this registry the NephCure Kidney Network, or NKN. How does it work? You spend about 30 minutes answering questions online. You will need to have some things on hand, like lab results. Remember, researchers and doctors need data to develop better treatment options, so the more detailed information you can provide the better. What happens next? When you complete the survey your data donation, is reviewed for completion and then de-identified, which means your name and other identifying information is removed, and is made available to researchers and clinicians studying and treating FSGS and the conditions that cause Nephrotic Syndrome. Your data donation provides valuable information that can change the face of research. Your donation may make it easier for researchers to determine if you could be eligible to participate in clinical trials, which can be anything from answering a survey to visiting a medical center for more involved studies. Your participation is completely voluntary. It’s been more than a decade since there has been a breakthrough treatment for kidney disease, and there are no FDA-approved treatments for FSGS and NS available today. As cases of chronic kidney disease continue to rise, we need to change that. Your data donation can help. Join the NKN today and join a movement to make a difference.