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Archives for November 2015
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.
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.
Contact: Lauren Lee, 610-540-0186 ext. 32
SOURCE NephCure Kidney International
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.
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).