Are You Newly Diagnosed or New to NephCure? August 14, 2014 by Lauren Eva Are you or a family member/friend impacted by Nephrotic Syndrome, FSGS -Focal Segmental Glomerulosclerosis – or MCD – Minimal Change Disease? You have come to the right place! Hearing a foreign diagnosis that is difficult to pronounce, let alone understand, is very unsettling. Know that you are not alone. NephCure Kidney International and our community of patients, patient families, medical professionals, and researchers are here to provide you with the tools you need to get connected, get educated and find out about the latest research and treatment options available. How do I get started? Help us help you, by telling us what brought you here to NephCure Kidney International and what resources you are seeking. It’s easy, just click here, answer a few simple questions. This gives us the jumping off point to find out where you are in your individual journey with Nephrotic Syndrome and how we can provide you with the tools you need to join in the fight for improved treatments and the cure!
Countdown To A Cure Calgary August 12, 2014 by Lauren Eva Countdown To A Cure Calgary successful in raising money and awareness for Rare kidney disease in Canada March 10, 2014 On March 8, The NephCure Foundation held a fundraiser to support Canadian research initiatives seeking the cause and cure for the rare kidney disease FSGS (Focal Segmental Glomerulosclerosis) and Nephrotic Syndrome. Countdown To A Cure, a Denim and Diamonds-themed reception and dinner featured an array of delicious foods, music, silent auction items and more. The event held at Silver Springs Golf & Country Club and attended by more than 120 supporters, raised more than $45,000 for Canada-based research initiatives. Through a partnership with the Kidney Foundation of Canada, every dollar raised from the event will be matched to support specific research programs in Canada. Andrea Galbraith of Calgary organized this first annual event. Andrea’s daughter, Sophia, was diagnosed with the rare kidney disease FSGS at age 2. Since 2010, Andrea has now raised more than $185,000 for research to find a cure for Sophia and others battling these terrible kidney conditions. In addition to Countdown, Andrea’s fundraising efforts have included running a 10k race with her brother, organizing the 2012-13 NephCure runs/walks and a special event in Ontario. “Andrea’s commitment to finding better treatments for her daughter’s disease impacts all families dealing with these kidney conditions,” said Henry Brehm, CEO of The NephCure Foundation. “Andrea is a very special person as every day she gives her time to make life better for others. The volunteers from CIBC, friends and family all contributed to the event’s success.” Andrea’s daughter, Sophia, has been hospitalized more than 40 times because of complications related to FSGS. “I have a sick child and there are others battling kidney disease as well. All they want is to lead a normal life,” said Galbraith. “It’s important for people to know about FSGS and Nephrotic Syndrome. I have an older daughter that is often feels left out because of the health needs of her younger daughter. These conditions impact the lives of patients and their families.” NephCure supports research conducted by investigators associated with Canadian institutions through a grant award co-sponsored with Kidney Foundation of Canada. In 2011, the first recipient of the $100,000 award was Dr. York Pei at University of Toronto. NephCure has committed to support up to two studies at Canadian institutions in 2014. The NephCure Foundation is the only organization solely committed to seeking the cause and cure for the kidney disease FSGS and Nephrotic Syndrome. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NephCure aims to help science unlock the biological mechanisms that cause these serious conditions and ultimately find a way to cure and prevent them. Money raised for NephCure in Canada stays in Canada and funds research and education programs applicable to FSGS and Nephrotic Syndrome.
Montreal Walk August 12, 2014 by Lauren Eva On September 14, 2013 in Montreal’s Parc Maisonneuve, friends and members of the Spadafora family gathered for the annual NephCure Walk in support of ‘Team Andrew’. Over $16,000 was raised at the event and this amount will be matched by the Kidney Foundation of Canada bringing the combined total for the event to $32,000! Congratulations to everyone on a job well done!
Montreal ZUMBAS for a cure! August 12, 2014 by Lauren Eva On Saturday, October 26, Rita Spadafora, mother of Andrew, and just hot off the trail of her annual NephCure walk, hosted a ZUMBA-thon to raise nearly $600 for the NepCure Foundation. Congratulations Rita, friends and Family! For more information and to view photos from this event, visit https://www.facebook.com/NephcureCanada
Calgary Virtual Walk August 12, 2014 by Lauren Eva On Saturday, September 28, 2013 several families walked or ran in different areas of Calgary to support The NephCure Foundation. This ‘virtual walk’ was held as an alternative to the walk which, like so many others, had to be cancelled because of the flooding that took place in June. Despite all the challenges , the Calgary walk managed to raise another $31,000.00 for kidney research which brings us another step closer to finding a cure. Also, the funds raised will be matched by The Kidney Foundation of Canada which will bring the total raised to $62,000. Thank you Calgary!
Check out our NEW Featured Patient Stories! July 31, 2014 by Lauren Eva Read about Jackson, Warner, Tessa, Alyssa and Christopher and their courageous fights against FSGS and Nephrotic Syndrome! Jackson’s Story Our son, Jackson was diagnosed with FSGS last week – January 2013 – following a kidney biopsy. He received this terrible news two weeks before his sixth birthday. We discovered this when we asked the pediatrician if he should be getting sick as often as he was – pneumonia, followed by two ear infections, a number of colds, strep etc. We also noticed he was tired a lot, did not have much of an appetite and generally did not feel “right” most of the time. The pediatrician said it would be a good idea to check his blood to see if we saw anything. The blood results came back with several red flags. They found low albumin and total protein in the blood and an elevated sed rate as well as low immunoglobulin. We followed up the blood work with urinalysis and discovered that he has Nephrotic Syndrome – spilling huge amounts of protein into his urine. Our next step was to see the pediatric nephrologist the day after Christmas, who put Jackson on high-dose prednisone. We tested his urine daily for protein hoping that the steroids would work. When that did not stop his protein from spilling into his urine, the doctor suggested performing a kidney biopsy. It was following the biopsy that we learned that he has FSGS. We know that we have a rough road ahead and are hoping desperately that a cure can be discovered very soon. Jackson is the light of our lives, is loved by many and has always been one of the sweetest boys I have ever known. Warner’s Story My son Warner became ill in April 2013. As soon as his doctor saw his puffy eyes, she ordered a urinalysis. He was positive for protein and was started on prednisone. We were then sent to a pediatric nephrologist. Warner stayed on steroids but in July, doctors found casts (tube-shaped particles) in his urine. They then ordered a kidney biopsy that came back as Minimal Change Disease. We then started him on CellCept and blood pressure medications in addition to the steroids he was already taking. Once again, he did not respond to the steroids or the CellCept. In November, his doctor discontinued his CellCept and steroids and started him on Prograf. Warner has been in remission ever since with just Prograf! I know that this is just the beginning of our long road, but God has answered our prayers and has given us hope that children with this disease can be normal. My son is happy, and doesn’t have side effects from his medications or his disease. Alyssa’s Story In 1996, my life started changing. I was four-years-old when my mother noticed that I was sleeping in unusual amounts and that something was wrong. My doctor ran some tests and found large quantities of protein in my urine. I was then referred to a kidney specialist in Kalamazoo, MI, but after a kidney biopsy, the results were inconclusive. My mom pushed the problem behind her for a while, until two years later when she was sure something was wrong. I had another kidney biopsy at age six and this time, the results showed that I had FSGS and Nephrotic Syndrome. I was put on regular medication that was supposed to help me go into remission. I endured all of the nasty side effects and also went on many different forms of medicines from age 6-13, but none of them worked. My mom was told to accept the reality of the disease because the doctors said by age 11, I would be facing kidney failure leaving me bed-ridden and unable to do anything. Even though the side effects from the medicines continued, like when my gums were growing over my teeth, I still lived out my life as normal as I could. I joined the cheerleading squad and track team in high school. I even ran a mile in six minutes and 22 seconds, winning first place! I am now almost 20 years old and living with my fiancée. I am doing great health-wise, but I will eventually have to receive a kidney transplant (hopefully not anytime soon!). The doctors always told me, “You can’t, you can’t, you can’t,” but I made a promise to myself to always prove them wrong. I went from a girl who was doomed to a girl who can do anything she puts her mind to! I have to thank my family for their years of praying and also to thank God who has had me in His hands ever since I was born. Tessa’s Story The first time I was alerted about any medical problems was when I became pregnant with my first child at the age of 18. It was discovered that I was spilling a large amount of protein in my urine. The OB doctor was concerned about preeclampsia and sent me to an urologist. The urologist did some tests but wasn’t overly concerned. He did refer me to a nephrologist to be on the safe side. The nephrologist did test after test and it was discovered that my cholesterol was off the charts. I had lots of edema throughout, and my blood pressure was dangerously high. Since I was pregnant, a kidney biopsy was out of the question. I was sent to a high-risk pregnancy doctor to continue seeing throughout the rest of my pregnancy. The pregnancy was rough as it was difficult to keep my blood pressure down. Most of the drugs I needed to use would be toxic to the baby. I ended up being hospitalized twice for the blood pressure problem and on complete bed rest for the last couple of weeks of the pregnancy. My kidneys were in poor shape as the amount of protein spilling kept increasing and the edema increasing as well. There was concern that the baby would be small, so there were visits made weekly to the OB doctor and multiple ultrasounds. At this time, the nephrologist thought that I had lupus, but couldn’t confirm so until a biopsy was done. I ended up having a healthy baby boy at 7lb 9 oz. The doctors immediately started me on the more toxic/potent blood pressure medications, so I could not breastfeed. They let my body recover six months before doing a kidney biopsy. It was then discovered that I had FSGS. I was started on high doses of prednisone (60mg a day) to try to put the disease in remission. My body responded initially with a decreasing protein amount, but it rebounded and didn’t stay that way. I ended up staying on those high doses for nine months with the moon face and all of those nasty side effects while trying to care for a newborn. Needless to say, the medication didn’t work, but over time, and with multiple medication changes to control blood pressure and cholesterol, my condition stabilized. My son is now 12 years old and my kidneys are stable. I am down to taking only one ACE inhibitor and two cholesterol pills. The amount of protein I spill has stabilized and my kidneys are still working perfectly. I cannot have any more children but I am so grateful that I could at least have one of my own and the pregnancy is what alerted physicians to the problem. Had I not, I fear what shape I would be in at this time with no chance of having children. Christopher’s Story Hello. My name is Christopher and in 1989 at the age of two I was diagnosed with Nephrotic Syndrome. Growing up I would relapse constantly, especially around the holidays. Immense weight gains, pain in my legs, serious edema and a host of other symptoms have been apparent in my life. I have now dealt with the condition for over 20 years. I’ve had all the mediations from Imuran, Cyclosporine, and the most popular of them all Prednisone off and on my whole life. So far in my life, I’ve accomplished a lot by graduating from college and doing a lot of community service, but the Nephrotic Syndrome relapses still invade in my life at times. It knocks me down but I seem to get up from it every time. I used to think there weren’t others with the same issue, but I see I’m mistaken. I currently live in Los Angeles and I’m looking forward to meeting people with experiences like mine and attending events that help in the fight against nephrotic disorders.