NephCure Kidney International Rings Opening Bell at NYSE August 14, 2014 by Lauren Eva NephCure Kidney International (NKI) rang the opening bell at the New York Stock Exchange (NYSE) at 9:30 AM Friday, August 15, 2014. “We are thrilled to have been asked and for the opportunity to join the legions who have come before us in having this honor,” said Mark Stone, NephCure Kidney International CEO. Representatives from NKI took the podium alongside NephCure Board Members and NephCure families including The Silvermans, The Genatt’s, Michael Levine, and Tim Brink. Five-year-old Jed Silverman had the honor of ringing the bell. “This is an incredible opportunity for NephCure Kidney International. We appreciate the chance to raise awareness of the foundation, and its work to find a cure for the devastating kidney disease FSGS and the other diseases that cause Nephrotic Syndrome,” said Michael Levine, NKI Board Member. Mr. Levine’s 11-year-old son Matthew is currently battling FSGS (Focal Segmental Glomerulosclerosis). More than 8,000 people are diagnosed with Nephrotic Syndrome every year, and FSGS is the leading cause of kidney failure in children. In the United States alone more than 26 million suffer from some form of kidney disease. Since its inception, NephCure has contributed more than $13 million dollars toward FSGS and NS research. NKI remains the only organization dedicated to funding research to end FSGS and NS.
The NephCure Foundation is Now NephCure Kidney International August 14, 2014 by Lauren Eva The NephCure Foundation is Now NephCure Kidney International New Name, Same Dedication to a Cure for FSGS and the diseases that cause Nephrotic Syndrome “We are here to create help for today and hope for tomorrow for thousands of Nephrotic Syndrome and FSGS. It is our mission to accelerate research toward better treatments and a cure for these diseases. We will advance this mission as NephCure Kidney International , a catalyzer, convener, and collaborator of and with the best research minds in glomerular disease, as we look to a future without suffering from these diseases,” said NephCure Kidney International (NKI) CEO Mark Stone. NKI continues to be the sole organization focused on funding research and finding a cure for Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome (NS). Each year, more than 8,000 people are diagnosed with NS, and in the US alone more than 26 million Americans suffer from some form of kidney disease. “Our dedication and commitment to helping patients through accelerating research is as firm as ever, and we trust this commitment is reflected in our new name,” said Marilyn Hailperin, NKI Director of Research. Since its inception, NephCure has contributed more than $13 million dollars toward FSGS and NS research. Look for NephCure’s new brand rollout 9:30 Friday, August 15, 2014 when NKI rings the opening bell at the New York Stock Exchange. Learn more about NKI at www.NephCure.org.
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 Attends National Kidney Foundation Spring Clinical Meetings in Las Vegas, Nevada August 8, 2014 by Lauren Eva NephCure went to Las Vegas last week for the National Kidney Foundation’s Spring Clinical Meetings, where 3,000 nephrologists, nurses, dietitians, and social workers, among others, gathered to learn about the newest developments related to all aspects of nephrology practice. We met with some area Nephrologists and patients and shared information around the NephCure Kidney Network Patient Registry (NKN). NephCure Scientific Advisory Board members Dr. Debbie Gipson, Dr. Daniel Cattran, and Dr. Gerald Appel were in attendance and led workshops on updates in Nephrotic Syndrome for 2014. NephCure was also one of several authors of “Understanding Decision Making in Nephrotic Syndrome (NS) from the Perspective of Patients, Parents and Providers” which was presented at the Poster Session throughout the conference. We also saw a lot of promotion for the Luis Collazo fight, which took place May 3rd at the MGM Garden Arena. Collazo was wearing NephCure in support of his friend Allie Genatt.
NephCure on Capitol Hill for 2014 Kidney Community Advocacy Day August 8, 2014 by Lauren Eva May 12, 2014 On May 1, 2014 more than 100 advocates met with 133 congressional offices, including with 19 Senators and Representatives to raise the profile of kidney disease and make the case for investing in kidney research. Another goal was to garner additional co-sponsors for the Immunosuppressive Drug Coverage Act, which will extend coverage of immunosuppressive drugs for Medicare patients who receive a kidney transplant. L-R NephCure Advocate Pam Duquette; NephCure CEO Henry Brehm; NephCure Advocate and FSGS Patient Melanie Stewart; Former NFL Player, Kidney Transplant Recipient and Friend of NephCure Donald Jones Organized by the American Society of Nephrology (ASN), the advocacy day drew constituents from fourteen organizations, including NephCure Kidney International, lent support to the effort, joining forces to champion the cause of kidney disease research and treatment, which we hope will lead to a cure. NephCure was also honored to have one of our own, Melanie Stewart, present to nearly 100 people at a congressional briefing on kidney research and innovation. The briefing, titled “Innovations in Kidney Disease Research: New Hope for Patients,” was co-chaired by U.S. Representatives Tom Marino (R-PA) and Jim McDermott (D-WA), both of whom spoke about their strong support for the kidney community and for research funding to develop cures. “It’s a privilege to tell my story and raise awareness of FSGS, and possible transplant challenges for kidney disease patients,” Stewart said. About The NephCure Foundation NephCure Kidney International 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. Additional Information About The Legislative Agenda Funding Innovation, Improving LivesResearch and innovation are critical to advancing new therapies for the more than 20 million Americans with kidney disease. Kidney Community Advocacy Day participants will campaign for an additional $150 million per year for 10 years in additional kidney research funding to spur innovation. This funding is needed to help develop new therapies that enhance patients’ lives and ultimately cure this public health burden. Immunosuppressive Coverage—A Common Sense ChoiceKidney transplant recipients must take immunosuppressive drugs to maintain the health of their transplants. Currently, Medicare only covers the cost of these drugs for 36 months. Those who cannot afford to pay for the immunosuppressive drugs (approximately $4,000 per year) end up back on dialysis (the government spends approximately $90,000 a year for care for patients on dialysis). L-R NephCure Advocate Pam Duquette gives the patient and family perspective as the parent of an FSGS patient, presenting with Nephrologist Sarah Faubel, MD to Congressman Mark Udall’s office Extending Medicare coverage for immunosuppressive drugs over a recipient’s lifetime is the common sense solution, improving quality of life for people with kidney disease and saving taxpayer dollars.Leaders who participated in Kidney Community Advocacy Day know what’s at stake: More than 20 million Americans have kidney disease, the 8th leading cause of death in the United States. 200,000 of these Americans are children and adolescents, 15,000 of whom are reliant on dialysis or a kidney transplant to remain alive. More than 600,000 Americans have kidney failure, known as end-stage renal disease (ESRD). More than 185,000 Americans live with a kidney transplant and more than 100,000 more are on the wait list. Nearly all patients with kidney failure are Medicare beneficiaries regardless of age, income, or disability. ESRD patients account for nearly 7% of Medicare costs but less than 1% of Medicare patients— a total of nearly $35 billion annually. Nearly 28% of Medicare expenditures involve patients diagnosed with kidney disease.
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.
Jet Food Stores Supports Rare Kidney Disease Research with In-Store Program August 8, 2014 by Lauren Eva The Turner family and Jet Food Stores change the face of kidney disease, one kidney at a time. On June 2, Jet Food Stores will launch their seventh annual Kidney Icon campaign in support of The NephCure Foundation, whose mission is to support scientific research pursuing improved treatments and cure for kidney disease FSGS and Nephrotic Syndrome. Through August 4th, 51 Jet Food Stores locations will display kidney icons available for purchase by patrons for $1 and $5 each. “The NephCure Foundation is tremendously grateful for the support of Jet Food Stores,” said NephCure CEO, Henry Brehm. “Since 2008, Jet Food Stores has generated an average of $30,000 each year through this Kidney Icon program alone. This funding has supported exciting advances in research, including the identification of over 28 genetic mutations associated with FSGS, a rare and debilitating disease.” For their 2014 campaign, with the help of the surrounding communities, the Georgia convenience store chain hopes to surpass past years’ contributions. NephCure board member and Jet Foods President Charles Turner is the driving force behind the program. 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. Last year, Amy Bussey and her staff at the Jet Store in Douglas, Ga. raised $3,338, the most raised by a single store out of all of their 51 locations. A list of stores participating in the 2014 program can be found here. New for 2014 is an Adopt-A-Store component. Local NephCure families wanted to express their gratitude to Jet Food Stores for improving outcomes for their loved ones. Each family is “adopting” a store to personally thank the employees who have made a difference in their lives. “It’s a way for our families to explain the impact that Jet Food Stores has in their lives. An opportunity to share their stories and let these amazing Jet Foods employees meet the true face of NephCure – the families whose lives are impacted by these terrible diseases,” said NephCure COO Mark Stone. This major fundraising effort comes weeks after the convenience store company held their 11th Annual NephCure Golf Classic at Twin City Country Club in Sandersville, Ga. Jet Food Stores are working to improve lives in their community and world wide. About Nephrotic Syndrome 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 result in renal 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. About The NephCure Foundation The NephCure Foundation is the only organization solely committed to seeking a cause and cure for the kidney disease Focal Segmental Glomerulosclerosis (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.
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.
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.