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.
NEWS RELEASE: A Life Cut Short; Legendary Rugby Player Dies After 20-Year Battle With Kidney Disease November 19, 2015 by Lauren Eva KING OF PRUSSIA, Pa., Nov. 18, 2015 /PRNewswire-USNewswire/ — NephCure Kidney International is deeply saddened to hear of the passing of Jonah Lomu– a 20-year Nephrotic Syndrome patient, legendary rugby player, and all around wonderful person. Our thoughts are with his family, friends and many fans during this difficult time. Nephrotic Syndrome is a combination of symptoms that result when the kidneys fail to filter properly. The main indication of Nephrotic Syndrome is that protein leaks into the urine, which may cause swelling, fatigue, and scarring of the kidneys. Nephrotic Syndrome can occur because of rare diseases like Focal Segmental Glomerulosclerosis, Minimal Change Disease, or Membranous Nephropathy, which have no known cause or cure. Many Nephrotic Syndrome patients progress to end stage renal disease, requiring transplant or dialysis. A transplant is not always a cure for Nephrotic Syndrome patients, as the disease can reoccur in the new kidney. Like other chronic illnesses, Nephrotic Syndrome takes a toll on both the patient and family’s emotional well-being. Patients and their families often suffer from depression, which only adds to the burden of managing this devastating disease. NephCure Kidney International is leading the global effort to find better treatment options and a cure for Nephrotic Syndrome and the diseases that cause it. By bringing together leading scientists, world-class physicians, industry partners, and an international patient community, we leverage support and fund research to improve the lives of all those affected by Nephrotic Syndrome. Our thoughts are with Jonah’s family and all of the brave patients living with Nephrotic Syndrome. For more information, contact info@nephcure.org or visit www.NephCure.org Contact: Lauren Lee, 610-540-0186 ext. 32 SOURCE NephCure Kidney International
NephCure Kidney Walk Returns to Houston Area Saturday, November 14th November 10, 2015 by wpengine Houston, TX (November 10, 2015) – The NephCure Kidney Walk returns to the Houston area this Saturday, November 14th to a new location in The Woodlands. The walk brings together Houston 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 Alden Bridge Park – The Woodlands, 7725 Alden Bridge Dr, Spring. Registration opens at 9 and the walk begins at 10 a.m. Immediately following, there will be fantastic raffle prizes and a silent auction with the chance to win tickets to the Houston Astros. There is no registration fee, although teams are encouraged to raise at least $500, with a total event goal of $20,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/Houston. Local walk participant Trista Vigil will again be participating in the Houston Walk and asks that you join her this Saturday. “Why NephCure?”, says Trista. “Because it’s personal! It was early May of 1998, just days away from my 14th birthday and I noticed significant swelling in my eyes, lower extremities, and torso. After a doctor’s visit, a hospital stay, and a trip to a pediatric nephrologist 3 hours away from my home town I was told that I had nephrotic syndrome. My official diagnosis of minimal change disease wasn’t “official” until my first biopsy in 2007.” “It was in 2005 that I came across NephCure while doing some online searching about the disease itself.” remembers Trista. “NephCure’s website had so much information. It was about 2 years later that I got involved, I was involved when the Colorado chapter was started and it was amazing to meet people who knew what I was going through. Up until that point I had never met anyone elsewho had MCD, NS, or FSGS. It was wonderful to know that there were people out there that wanted to make my life better by saving kidneys and saving lives!” I recently had a biopsy in October of 2015 and my diagnosis is still the same, which is a relief, but this disease still impacts my life on a daily basis. Every relapse is heartbreaking. Like most people I want a cure, I want better treatments, I want to save my kidneys. NephCure is helping and I am so grateful and honored to be part of the discussions, part of the NephCure Walks, part of NephCure. I have met some amazing and inspirational individuals through NephCure, I just wish we didn’t all have in common what we have in common.” 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. To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/houston or contact Jayne Drew at jdrew@nephcure.org About NephCure Kidney International NephCure Kidney International (NKI) is a 501(c)(3) tax-exempt public charity established in 1999. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NKI is the only organization committed exclusively to supporting research to identify the cause, improve the treatment, and find the cure of the two potentially debilitating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). ####
NKI Grand Rapids Walk October 18th October 15, 2015 by wpengine Grand Rapids, MI – The NephCure Kidney Walk returns for the 4th year to the Grand Rapids area, Sunday, October 18th. The walk brings together 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 Millennium Park, 1415 Maynard Ave SW in Walker, MI. Registration opens at noon and the walk begins at 1 p.m. There is no registration fee, but teams are encouraged to raise at least $1,000, with a total event goal of $10,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/GrandRapids. The NephCure Kidney Walk is especially meaningful to local residents and co-chairs Heather Luchies and Tressa Hollinger. Both of whose lives and families are impacted by these conditions. “Being involved in the planning of this walk is my way of giving back to NephCure, who are working hard to find a cure for my disease”, says Heather. “Plus I find it helps “embrace” my disease rather than sit on the couch and do nothing about it.” Both Heather & Tressa will be on their local Fox 17 station this Saturday morning at 7:40 to do a live interview about the NephCure Kidney International Walk this Sunday. “This is what I’ve wanted since we partnered with NephCure and started the walk” says Tressa. “More awareness to find a CURE! Let’s rock this Heather Luchies!” To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/GrandRapids or contact Jayne Drew at jdrew@nephcure.org
NephCure Kidney International to Host First-Ever Fundraising Gala in Chicago October 8, 2015 by wpengine Chicago, IL (October 8, 2015) – Just one month until NephCure Kidney International’s (NKI) Chicago fundraising gala. This inaugural event will be held on Friday, November 6, 2015 from 7:30 PM to 11:30 PM at Architectural Artifacts, Inc., 4325 N. Ravenswood Ave, Chicago, IL. The event, themed “Crusade for a Cure” and sponsored by Rush University Medical Center, will bring together the most generous heroes of Chicago to raise money for research and finding a cure to the debilitating chronic kidney diseases Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). “We are thrilled to finally bring this fundraiser to Chicago,” said Jayne Drew, Regional Director for NephCure Kidney International. “The gala is in its 11th year in New York City and has raised more than $6 million. We believe we can have just as great of an impact here in Chicago.” Co-chairing the gala are Chicago natives and couple, Alap Patel and Amanda Schackart. “When Amanda was diagnosed with FSGS, our instant reaction was to learn as much as we can about the disease,” said Patel. “The problem, we soon realized, is that so little is actually known about it. This is why Amanda and I got involved with NephCure Kidney International. More research needs to be done on FSGS and Nephrotic Syndrome. More people need to be aware of these conditions, and the impact it has on millions of families across the US. We want to build a community where families affected by these diseases can know more and learn more from each other. We want to support a network of doctors who can discover more.” “We need more, we want more, and we want to give more!”, says Schackart. Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidneys. The result is that beneficial protein is spilled from the kidneys into the urine and is lost. Over time, this condition can result in renal failure and the need for dialysis or a kidney transplant. The cause of Nephrotic Syndrome and FSGS is not known, it can affect anyone, and there is no cure. 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. More than prostate cancer. Tickets prices to the gala start at $125 per person, with VIP table options available, and include local cuisine, libations, raffle, as well as a silent auction. For more information about NephCure Kidney International, to purchase tickets or inquire about sponsorship opportunities, please visit the event website here CRUSADE, or by texting “CRUSADE” to 52182, or email Jayne Drew at jdrew@nephcure.org. About NephCure Kidney International NephCure Kidney International (NKI) is a 501(c)(3) tax-exempt public charity established in 1999. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NKI is the only organization committed exclusively to supporting research to identify the cause, improve the treatment, and find the cure of the two potentially debilitating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). ### Media Contact: Jayne Drew jdrew@nephcure.org 267-261-4918
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!