NephCure Silent Auction and Scavenger Hunt – Herndon, VA September 5, 2014 by wpengine Come out and join the fun in Herndon, Virginia with this exciting fundraiser! Local volunteer and lead fundraiser Nikki Buermeyer is holding her fifth annual event to support NephCure Kidney International. WHEN: Saturday, October 11, 2014 from 2-5pm WHERE: Frying Pan Park Visitor’s Center at 2709 West Ox Road, Herndon, VA 20171 Join us for our fifth annual event benefiting NephCure Kidney International! This year we are excited to bring you even more fun ways to raise support for this important cause. Silent auction Video scavenger hunt Live band Wine, beer and baked goods Free T-shirts to anyone that donates $50! Contact Nikki Buermeyer with questions, suggestions, or if you would like to donate to the silent auction or volunteer. Email nbuermeyer@teamnephcure.org Phone: 703-476-8203 Thank You to our Sponsors!
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!
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!
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.
NephCure Participates in BTIG Commissions for Charity Day August 8, 2014 by Lauren Eva May 19, 2014 BTIG, LLC, a global financial services firm specializing in institutional trading and related brokerage services, raised over $5 million on Tuesday May 13th, 2014, from its annual Commissions for Charity Day. The event hosted athletes and celebrities as “guest-traders” to help raise money for a wide range of children’s charities and other important causes. The money raised this year will be donated to a number of charities from around the world. NephCure was among many charities selected to participate. “Guest-traders” from this year’s event, included: Beth Ostrosky Stern, Bobby Valentine, Bode Miller, Bridget Moynahan, Carmelo Anthony, CC Sabathia, Damaris Lewis, David Wright, Eduardo Garcia, Eli Manning, Joe Namath, Jorge Posada, Mariano Rivera, Matt Harvey, Matt Dillon, Padma Lakshmi, Petra Nemcova, Phil Simms, Reggie Jackson, Shaquille O’Neal, Victor Cruz and many more. “This year, with the help of our clients, we partnered with more celebrities and professional athletes than ever to raise an unprecedented amount of money to support many important causes,” said Scott Kovalik, co-founder and CEO of BTIG. “We really look forward to our charity day each year as it’s a great time for our clients and employees to come together to support important causes. The unique platform gives celebrities an unusual vehicle through which they can donate their time and raise money for causes important to them.” said Steven Starker, co-founder of BTIG, “This was our strongest year yet, and we are eager to see how the event makes a difference for the participating charities.” Over the past twelve years, the firm has raised more than $30 million and supported hundreds of charitable organizations. This year’s event set records for the annual charity day with the amount of donations raised and the number of charities involved. About BTIG BTIG, LLC is a global financial services company offering products and services across Equity Trading, Global Portfolio and ETF Trading, Derivatives, Fixed Income, Futures & Commodities, Foreign Exchange, Convertible/Preferred Securities, Corporate Access, Equity Research, Capital Markets, Prime Brokerage, Electronic Trading and Outsource Trading. With U.S. offices located in New York, San Francisco, Dallas, Boston, Chicago, Los Angeles, Atlanta, Red Bank, and Purchase and overseas affiliates located in London, Hong Kong, Singapore and Sydney, BTIG, including through its affiliates, employs more than 450 professionals worldwide.
What does STAND UP & BE COUNTED mean to you? August 8, 2014 by Lauren Eva At The NephCure Foundation, we believe everyone can make a difference in the search for better treatments and a cure for FSGS and Nephrotic Syndrome; we believe everyone can STAND UP & BE COUNTED for their child, spouse, loved one, friend, even for ourself. Through June 16, Tweet, Instagram, and Facebook post with #SUBC and an anonymous donor will give $5 to NephCure! Who do you STAND UP for? Get the flyer and post every day! Be sure to tag your post with #SUBC and share with your friends. STAND UP & BE COUNTED. Thank you for taking the time today to consider supporting NephCure in our fight to end debilitating kidney diseases like Focal Segmental Glomerulosclerosis (FSGS) and other conditions that cause Nephrotic Syndrome (NS). Thank you for doing what you could in the past to contribute toward finding a cure. The fight continues, and more support is needed. Today, you have a chance to do more. Today you have a chance to STAND UP & BE COUNTED in the fight to find a cure for the rare, life-altering kidney diseases that cause Nephrotic Syndrome. Chances are you know someone suffering from a kidney disease. If you do, you’ve seen firsthand how lives have been affected by endless dialysis appointments, the anxiety of waiting for a kidney transplant, the burning desire to keep hope alive while waiting for a treatment that could help, and ultimately a cure. You can do something today. Your contribution is more than financial – you are contributing your voice. You are choosing to STAND UP & BE COUNTED for your child, your friend, your neighbor, or loved one in the fight against kidney disease. You are contributing hope for a cure. Eight-thousand people are diagnosed with Nephrotic Syndrome every year. People like 4-year-old Mason who’s lived with NS for more than half his life already, and 30-year-old Tessawhose life was turned upside down when she became ill while pregnant with her son, and was ultimately diagnosed with FSGS. Each person with a condition that causes NS has a story like Mason’s and Tessa’s, and each one is waiting for a cure. You, like so many others, take your charitable contributions seriously. You want to be part of finding a solution, and not feel like just another donor contributing to overhead or operating costs. We’re asking you to be part of a solution. When you contribute through STAND UP & BE COUNTED, your funds go to NephCure, but your contribution goes to your loved one, your friend, your neighbor. You are doing more than sending a donation, you are standing up for someone you know, someone you love, someone you cherish. We know that every patient counts. We won’t rest until we’ve funded the research that finds a cure for each of these rare, debilitating diseases. STAND UP & BE COUNTED today – 93 cents of every dollar you donate goes directly into research, education, and advocacy programs. You matter. Every contributor and every dollar counts. Who will you stand up for today in the fight to find a cure? The diseases are rare. Helping doesn’t have to be.
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.
Yoga For A Cure Fundraiser August 8, 2014 by Lauren Eva Every year on June 21 we celebrate the summer solstice, the longest day of the year and the official start of summer. The summer solstice is celebrated in many parts of the world with day-long festivals bringing communities together. This year, the community of Sleepy Eye found another way to celebrate the summer solstice, and help NephCure Kidney International. Kris Luebbert, certified yoga instructor and owner of Sky Blue Yoga, led a group of students and supporters in an outdoor yoga practice to raise money for NephCure. All-in-all, over $500 was raised. Read more about the event here. Want to host your own fundraiser? We can help! Contact us at events@nephcure.org for more information.
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.
Students and Teachers Throw Pies to Raise Money for NephCure July 29, 2014 by Lauren Eva With homemade targets reading “Throw Pies, Save Lives…Support NephCure!” 100 fifth grade students and their teachers from the International School of Brussels raised $520 for NephCure Kidney International during the school’s first ever pie-throwing event on June 24. Helped by an uncommonly sunny day, the event sparked a wonderful atmosphere for all involved. NephCure Executive Director Henry Brehm met with the students and faculty ahead of the event to talk about FSGS & nephrotic syndrome, and the mission and mandate of the Foundation. He gave out Nephcure bracelets, which the kids wore in the days leading up to the event. The teachers at the six whipped-cream pie-throwing stations took the hits from their students with great humor. See the fun firsthand in this video.