NephCure Presents NKN Poster Session at the National Conference on Engaging Patients, Families and Communities in all Phases of Translational Research to Improve Health August 28, 2014 by Lauren Eva NephCure was selected to present a poster session about the NephCure Kidney Network Patient Registry (NKN) at a national conference held August 21-22 in Bethesda, MD. The goal of the conference, hosted by Duke University’s Translational Medicine Institute, was to present and compare perspectives and examples of methods of engagement in research that include individuals, including patients and families and to generate ideas for sustaining community-engagement in all phases of research. Joanna Dauber, NKN Patient Registry Manager, notes, “Our presentation of the impact of social media in patient engagement was very well received. We had health care providers, scientists and other patient advocates comment on our early success of 200 enrollees in the NephCure Kidney Network patient Registry (NKN) within the first four months of the program. This is considered a robust start for a rare disease community.” Ms. Dauber and Chelsey Fix, a summer intern at NephCure, demonstrated the impact on enrollment after each targeted patient outreach campaign. The most successful method is personalized emails to patient families who have engaged with NephCure in the past (e.g., attended a Walk or a Lunch & Learn/Community Café). New patients respond best to Facebook posts. In addition to providing information about NKN, Ms. Dauber and Ms. Fix took advantage of the conference to meet informally and gain perspective on how other patient advocate groups engage community, especially methods for engaging community-based physicians so that they are comfortable informing their patients to consider enrolling in a patient registry. “An invitation to this prestigious event is not only important to raise NephCure’s profile, but it provides opportunity to learn from others so we can accelerate new research that will lead to better therapies for FSGS and other primary Nephrotic Syndrome disease,” says Marilyn Hailperin, National Director of Research. “We seek opportunities all the time to learn from others’ best practices and incorporate new ideas into our research agenda.” NephCure recognizes that patients’ perspective is important to advancing new research that will improve patients’ lives. The invitation to present at this National Conference demonstrates that NKN is emerging as a leading patient powered research network.
Five Tips for Navigating the NEW Nephcure.org August 18, 2014 by Lauren Eva Welcome to our new website! We’ve already heard from many of you who love the new look and feel of the site, and we appreciate the kind words. We also recognize that this site is VERY DIFFERENT from our former look and feel. Here are some tips for navigating the new site and becoming acclimated to the new structure. We’d love to hear from you! Let us know your thoughts by leaving a comment below or emailing us. Finding Your Way Around NephCure.org The Search Bar is amazing! We’ve implemented a much more robust and accurate search on this new site. If you know what you’re looking for, but aren’t sure where to find the information, use the Search Box at the top right of the banner to quickly find what you need. Widgets get you there fast. Wait…what’s a widget? Below the large box of rotating pictures, called a slider or slideshow, you will find eight (8) square photos with headline descriptions; these are called widgets. Use these to quickly jump to a section of the site you may be searching for. We’ve designed these with you in mind, based on user feedback and best practices in information design. How did we do? Let us know! Click on the logo to get to the “Home” page. Why isn’t there a link labeled “Home”? We asked a lot of questions of many people when building our new site. One of the things we learned is that including a button or link labeled “Home” can have a bad impact on SEO (search engine optimization). This means it can make it harder for people to find us, and harder for us to learn what’s important to you when we analyze our data. We’ve adopted the newer web design convention of using our logo at the top left of the screen as our “Home” link. Click on this logo from ANYWHERE in the site to get back to our home page. NEW navigation, designed with YOU in mind. We thought about you when we made our site. We thought about you a lot, and did our best to reflect that in the names of the links and pages we created, called our site architecture. We’re presenting the information you indicated is important to you first. Tell us how we did. We know from our focus group as well as other data that disease information is what most people look for first, so we created Living with Kidney Disease to house all information about FSGS, Nephrotic Syndrome, Minimal Change Disease, treatments and more. We also heard that engaging with and joining the NephCure community is important, so we created Community where you can find NephSpace*, Patient Stories and support. The most radical change is our new Get Involved section. Here you can find everything you need to know about getting involved with NephCure Kidney International (NKI), from Walks, to Fundraisers, to Donating to a fundraising team, signing up for our Patient-Powered Research Network, and Education. Recent News curated and updated regularly. Recent News includes updates from NKI, as well as patient stories, updates from NKI community fundraisers, and nephrology and research information from around the web. We highlight “top stories” in our slideshow on the home page and update this section regularly. Check back often to see the latest news! Know of a story we should feature? Submit it along with a link, if applicable, and contact information – we’ll take a look! *August 18, 2014: as of today NephSpace is being migrated to our new site and will be back online soon. We will post regular updates to www.nephcure.org as well as to the NephCure FaceBook page. Drop us a line if you’d like to be emailed directly with updates and announcements about NephSpace.
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.
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!
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.