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!
Jet Food Stores annual NephCure Golf Classic set for May 6, NASCAR Driver David Ragan and Former UGA Football Phenom David Greene to Attend August 8, 2014 by Lauren Eva May 1, 2014 On May 6, Jet Food Stores will host the NephCure Golf Classic at Twin City Country Club in Sandersville, Georgia. The event will benefit the NephCure International Kidney Foundation, an organization committed to supporting research seeking a cure for the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome. This is the 15th year of the golf tournament and the 11th it will benefit NephCure. The event has generated more than $350,000 for the NephCure mission since its inception. Forty-five foursomes have registered for the event. NephCure board member and Jet Foods President Charles Turner is the driving force behind the event. This cause is important to his family and their goal of supporting research to discover and make available better treatments for all families dealing with these kidney conditions. NASCAR driver and NephCure Ambassador David Ragan will attend. The Ragan family has a long history with Jet Food Stores. “We sponsored Ken Ragan 30 years ago,” said David Usry, vice president at Jet Food Stores. “We then started sponsoring his son David when he was 10 years old. We’ve sponsored him throughout his career. We’ve always had a great relationship with them; a friendship more than anything. [David] is a great guy and he has never forgotten where he came from,” Usry concluded. Ragan drives the No. 34 Ford for Front Row Motorsports in the NASCAR Sprint Cup Series. Another standout attendee will be David Greene, a former quarterback from University of Georgia. “He’s like Joe Namath around here,” Usry said. “He’s a great guy with a lot of Character.” Greene played for Georgia from 2000 to 2004. During his tenure, he set the NCAA Division I record for wins (42), a record set previously by Peyton Manning, and led the Bulldogs to a Sugar Bowl win in 2002. Greene spent three years in the NFL after being drafted by the Seattle Seahawks in 2005. Registration for the tournament will begin at 9 a.m. and will be followed by an autograph session with Ragan and Greene. Food and refreshments will be available throughout the course and a dinner will conclude the day. Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidney. The result is that beneficial protein is spilled from the kidney into the urine and lost. Over time this condition can lead to kidney failure and the need for dialysis or a kidney transplant. The cause for Nephrotic Syndrome and FSGS is not known and there is no cure. The NephCure Foundation is the only organization solely committed to seeking a cause and cure for Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). 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.
Teens Come Together to Take Charge of Their Health August 8, 2014 by Lauren Eva On Friday, June 6, 2014, a luncheon/meet-up designed just for teens and ‘tweens and their families was held at Nemours/A. I. duPont Hospital in Wilmington, Delaware. It was the first joint venture between NephCure and Dr. Joshua “J.J.” Zaritsky, Nemours Pediatric Nephrologist. The idea for this educational and fun-filled event came from 14-year-old Samantha Buck of Logan Township, NJ. Sam previously attended a Lunch & Learn event (Community Café) and stated, “When can we have a meeting like this for kids my age?” Dr. Zaritsky’s staff along with NCF Department of Education/Engagement Director, Lauren Lee and Patient Engagement Specialist, Sandie Rollins worked to make Samantha’s wish come true. The teens were also invited to join a brand new Facebook group launched for young adults from 13-25, which will be available to join the week of June 9, 2014. The group is called Kidney Strong and it is a supportive community for teenagers and young adults who have FSGS and Nephrotic Syndrome. It was a beautiful day and much of the event was held outdoors in an enclosed courtyard with a flowing fountain. The educational portion of the day included: the newCommunity programs sponsored by NephCure for patient families, information/explanation of patient-powered registry, the NephCure Kidney Network (presented by Abbey Swan, NephCure Operations and Grant Administrator), Healthy Eating tips presented by Nemours Registered Dietician, Megan O’Neill, and a parents-only session on Coping with Chronic Illness presented by Nemours’ Social Worker, Jessa Lewis. The teen/ ‘tween fun and recreational events included a Quizzo tournament, arts and crafts, Make-A-Friend Bingo plenty of laughs and some great NephCure and Nemours SWAG as a parting gift. In the end, everyone left with a new sense of community, and a commitment to finding better treatment options and a cure for FSGS and Nephrotic Syndrome.
The 10th Annual International Podocyte Conference Sold-Out in Freiburg, Germany August 8, 2014 by Lauren Eva Three hundred Nephrology researchers and clinicians descended on the university town of Freiburg, Germany to share the latest data on podocyte and kidney disease research. Co-chaired by Dr. Tobias B. Huber of Freiburg, and Dr. Thomas Benzing of Cologne, the 2014 conference presented a record number of abstracts to investigators and students from around the globe. “We are very excited by this participation, and the opportunity to share the latest research with our colleagues on topics ranging from biomarker data research to glomerular function, podocyte regeneration, and other topics. It is only through this research that cures for glomerular diseases will be found,” said Dr. Huber. Organized in collaboration with NephCure Kidney International, demand for the 10th Annual meeting became so high that conference organizers had made live stream video of the presentations available to additional attendees. The conference chairs recognized the expertise of their global scientific advisory committee in bringing a rich and vibrant meeting to life. “It’s powerful to be at the 10th conference, and to see how far research has come in the search for answers which will drive the development of new therapies for FSGS and other Glomerular diseases. The npartia[ation and collaboration amongst the scientists, the bio-pharmaceutical companies and clinicians is exciting to see happen,” said NephCure Kidney International CEO Henry Brehm. “We have more to do, and being among these professionals gives me hope.” Organizers closed the conference with a traditional awards ceremony. Dontscho Kerjaschki received the prestigious Marilyn Farquhar Award for Podocyte Research 2014. Evelyne Huynh Cong, Stefan Porubský,and Hani Suleiman received the Best Abstract Award. A full list of the 2014 International Podocyte Conference schedule and more information is available here. The 2016 International Podocyte Conference will convene in Jerusalem, Israel.
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.