Webinar: Being Your Own Best Advocate – October 21 September 24, 2015 by Kylie Karley Do you find yourself frustrated while dealing with the insurance issues related to NS? Do you want to know the most important questions to ask your healthcare team? Then JOIN US on October 21st for a webinar about “Being Your Own Best Advocate”. We will address some of the common hurdles that many families have to overcome when trying to get answers from the doctors and juggle insurance concerns. The webinar will be held on October 21st at 7:45 pm– REGISTER HERE to reserve your spot! Bring your questions and concerns, and we will get you answers!
Things That All Chronically Ill People Will Understand September 18, 2015 by Kylie Karley Thanks to Mariam Girgis for sharing this great video that helps us find the humor in living with a chronic illness! https://www.youtube.com/watch?v=iokn111Zn8A&feature=youtu.be
Chicago is Walking for a Cure this Weekend! September 17, 2015 by wpengine Co-chair Sue Rogers walks for her son. The NephCure Kidney Walk returns for the 9th year to Chicagoland this Sunday, September 20th. The walk brings together Chicago area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Centennial Park, 1776 W. Centennial Place, Addison, IL. Registration opens at 9 and the walk begins at 10 a.m. Music, food, and games will be held afterwards, plus fantastic raffle prizes, including a pair of tickets to the inaugural Countdown To A Cure Chicago fundraising gala themed Crusade For The Cure on Friday, November 6th at Architectural Artifacts at 4325 N Ravenswood Ave., Chicago. The walk is open to the public, but registration is encouraged in advance at Chicago Walk. The NephCure Kidney Walk is especially meaningful to Romeoville resident and walk organizer Sue Rogers, whose son has been dealing with Focal Segmental Glomerulosclerosis (FSGS) for over 11 years. “I love the support I have found from parents I’ve connected with through the walk,” said Rogers. “Some have been through so much already with their children, including dialysis and a kidney transplant. I admire their strength. Just being able to talk to another mom who understands what you are going through helps me maintain my sanity when I question myself how I’ll manage to handle it all.” Chicago native Aries Merritt won the bronze medal in the 110m hurdles in Beijing at the world track and field championships last month, with less than 20 percent kidney function caused by FSGS – days before receiving a kidney transplant. It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease, more than breast cancer and prostate cancer. Some doctors believe kidney disease of this nature might be the next epidemic of our generation. Start your team today! Team fundraising is a great way to get your friends, family, co-workers and neighbors involved. Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. Cannot physically make the event? Maybe you have a wedding on walk weekend. Or your son or daughter has a soccer game. Maybe you’re moving to a new house. We get it. Fall can be a busy time. But remember just because you can’t make it to walk day, doesn’t mean you can’t keep the tradition alive and make an impact by fundraising in support of NephCure Kidney International. Leave your footprint as a Virtual Walker. Please join in the fun & fundraising and setup a Virtual Walk Team and share with your friends & family on social media. We need everyone’s involvement. You will still be able to earn the commemorative Walk T-shirt! Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. REMEMBER – You can still Fundraise for your Walk team AFTER the walk is over for the remainder of 2015. So it’s not too late! Share your Team Fundraising Page & Photos on Social Media! Make sure you share frequently your page and event photos on Facebook, Instagram, Twitter and with your email lists. Use the hashtags #Selfies4NephCure #NKIWalk #Chicago A special thank you to Chicago Walk Co-Chairs Sue Rogers and Julia Bacarella – We are thankful for all that you do! To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/Chicago or contact Jayne Drew at jdrew@nephcure.org
Atlanta NKI Walk Celebrates it’s 6th year September 26th. September 16, 2015 by wpengine Team Macy Ray The NephCure Kidney Walk returns for the 6th year to the Atlanta area, Saturday, September 26th. The walk brings together Atlanta area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Thrasher Park, 93 Park Drive in Norcross, GA. Registration opens at 9 and the walk begins at 10 a.m. Music and entertainment will feature local band Fatback Deluxe. Food and games for the children will be held afterwards, plus fantastic raffle prizes and a silent auction. There is no registration fee, but teams are encouraged to raise at least $1,500, with a total event goal of $32,000. Walk volunteers Michael and Alisan Parnes are one of the families leading this event in honor of their sons, Zion and Donovan. Both boys were diagnosed with FSGS in 2009. “This disease caused Zion’s kidneys to fail when he was only 6 years old. He spent a year on dialysis and had a kidney transplant at 7 years old. Donovan is still living with this disease and our hope is that better treatments or a cure will be found so that he will never have to endure kidney failure and transplant”, says co-chair Alisan. “This is our 6th year walking in honor of our boys and the thousands of others affected by this terrible disease.” Basketball stars Alonzo Mourning and Sean Elliot both suffered from FSGS. Elliott became the first player to return to the NBA after a kidney transplant, in the Spurs game against the Atlanta Hawks in 2000. Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidneys and the cause is not known. FSGS is a leading cause of kidney failure in children. It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease, more than breast cancer and prostate cancer. Some doctors believe kidney disease of this nature might be the next epidemic of our generation. We want to thank all of our sponsors and volunteers, including Oxygen Financial, Gas South, Atlanta Braves, Fat Matt’s Rib Shack, and Fatbuck Deluxe. A special thank you to the wonderful team at the Roswell Junior Woman’s Club for their ongoing support and volunteers for the event. To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/atlanta or contact Jayne Drew at jdrew@nephcure.org
A New Kidney Journey Tool – Brought to You by University of Michigan September 16, 2015 by Lauren Eva Nephcure would like to share this new site, created and brought to you by University of Michigan. iNsider (Mykidneyguide.org) is the latest interactive way to log your patient journey and get tools and tips for the latest hurdle regarding Nephrotic Syndrome. iNSider is a tool built to help support patients and families on their journeys with Nephrotic Syndrome. It was designed with input from nephrologists, patients, and parents of children with Nephrotic Syndrome. We encourage you to check it out, register and use this easy and convenient conduit to understanding your disease.
Parents’ Place – Back to School 101 Webinar July 30, 2015 by Lauren Eva Please register for Parents’ Place-Back to School 101 Webinar on Aug 05, 2015 8:00 PM EDT at: https://attendee.gotowebinar.com/register/8489982755633437953 Going back to school can be exciting yet stressful. Add chronic illness and special considerations into the mix and it can be overwhelming! Join us for a FAQ session with other parents who have become “experts” at sending their children back to school and ensuring they have proper care. After registering, you will receive a confirmation email containing information about joining the webinar.
Innovations for End-Stage Renal Patients July 23, 2015 by Kylie Karley As many researchers continue to search for ways to minimize the damage caused by chronic kidney disease, The Kidney Project is exploring an innovative way to improve the lives of patients who have experienced kidney failure. The lab at UCSF is heading a project on a small, implantable artificial kidney, and NephCure had the chance to hold a Q&A with The Kidney Project to hear all about this project. It could be a game-changer for patients in need of dialysis! 1. What interests you about this area of the body? Why did you choose to work with kidneys? Chronic kidney disease has reached epidemic proportions. An astounding 26 million Americans live with this disorder. As incidences of diabetes, high blood pressure, and obesity rise – some of the key causes of chronic kidney disease – so do the numbers of people diagnosed with kidney failure. These patients will either need dialysis or a kidney transplant. Neither option is ideal. Only 20 percent of patients on a kidney transplant wait list in any given year receive a new kidney, and individuals receiving dialysis are often unable to work, eat normally, or live full lives. Our team is developing a surgically implanted, bioartificial kidney to perform the vast majority of the filtration, balancing, and other biological functions of the natural kidney. The two-part device combines a membrane hemofilter and a bioreactor of human renal tubule cells to mimic many of the metabolic, endocrine, and immunological functions of a healthy kidney. It is powered by the body’s own blood pressure without the need for external tubes and tethers or immunosuppressant drugs. 2. Where is the artificial kidney at in the development process? When do you hope to have it available for patients? We need to complete animal studies to demonstrate safety and functionality of the bioartificial kidney. Through our collaboration with the Food and Drug Administration (FDA), we have developed a pathway that will allow us to arrive at the first clinical trials with a pre-negotiated set of milestones. In this pathway, we must first show that the hemofilter will successfully operate in vivo for 30 days. We are currently working on this task. Given our budgetary constraints, we have taken the approach of constructing small-scale hemofilters and evaluating their performance inside animals as a function of filter arrangement, vascular connections, and surface coatings. We have successfully shown filtration for 10 days and vascular patency for 30 days. As funding becomes available, we will increase the filtration to 30 days with full-scale devices. The completion of this key task will provide the necessary data for us to approach the FDA for approval of the first clinical trial. We expect to have a device released for clinical trials in the year 2017 if we successfully raise all of the necessary funding and we do not encounter any unanticipated development challenges. Typically, there are at least two cycles of clinical testing required for all medical devices. The nature of the results of the first round of clinical trials will largely influence the timing of release and industrial-scale manufacturing. That being said, we estimate that the clinical trials will be complete by the year 2020. During the clinical trials, we will be working with manufacturers to discuss and manage the details of production. Once the clinical trials are complete, the device will be immediately available for patients. 3. Is there anything that our patients can do to assist with your efforts? The Kidney Project is an ambitious project and is not without its challenges. In the short term, our primary challenge is funding the research. A significant hurdle is procuring enough money in order to proceed through the preclinical studies, which would allow us to build full-scale prototypes to generate data for the first round of in-human studies. NKI’s note- Eventually, patients will be needed for these studies, so be sure to check our website, and The Kidney Project’s website often to stay up to date! 4. What other innovative projects should we be aware of? What’s exciting about kidney research right now? Several teams have developed the idea behind a wearable artificial kidney (WAK), which translates the traditional dialysis machine into something that can be worn on a belt around the waist. It works by filtering a patient’s blood through a membrane. While it is much more convenient than conventional dialysis, it is does not perform all the functions of a healthy kidney. We are excited about The Kidney Project and the promise it holds for patients. By building on proven scientific successes in cell biology and silicon nanotechnology, we are engineering an implantable and self-regulating bioartificial kidney that does not require the patient to be tethered to a dialysis machine or take immunosuppressive medications. NKI will continue to monitor for any further developments of these projects. For more information on The Kidney Project, visit their website HERE.
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