Chicago Walk for the Cure 2014 October 15, 2014 by Lauren Eva The Sunday, October 12, 2014, Chicago Walk for the Cure held in Addison, Il. was a huge success with over 115 walkers, including 10 patient families. After the walk, a carnival was held with games for all ages, along with a bake sale and raffle. The event raised over $10,000. Congratulations to our organizing committee and their families for making this event memorable.
NEW!! Clinical Studies Map! October 14, 2014 by Kylie Karley NephCure Kidney International Introduces Clinical Research Map October 14, 2014 We are excited to introduce a new user-friendly, interactive clinical research map. This map includes current clinical research sites and studies available to patients affected by FSGS and other Nephrotic Syndrome diseases. The map, which can be found here, will help patients sort through studies available to them. Categories include studies specific to adults, pediatrics, Nephrotic Syndrome, and FSGS, to name a few. “Patient participation is key to advancing research and treatment options available to patients,” says Marilyn Hailperin, the National Director of Research at NephCure. “This site map allows patients to view studies underway in their area.” This map is another way NephCure is living out our mission to support research seeking the causes of Nephrotic Syndrome diseases, to improve current treatments and, ultimately, to find a cure. Here at NephCure, we value the supportive role we play for our patients. Spreading the word about clinical research to our patients is a crucial aspect of this role, because, after all, patients power research! Link to the map: here. For more information about the risks and benefits of participating in clinical research, click here.
NephCure Kidney International Announces NKN Steering Committee Co-Chairs October 2, 2014 by Kylie Karley We are pleased to share that Kathleen Broderick and Randall Snyder were recommended and have accepted their nominations as Steering Committee Co-Chairs for the NephCure Kidney Network (NKN). Kathleen was considered a strong candidate due to her dual experience as a patient caregiver as well as a patient advocacy representative. Similarly, Randy’s dual perspective as a patient caregiver and clinical provider give him unique insight relevant to the NKN. Kathleen is a member of the NephCure Board of Directors and Research Committee and an editor at DeGruyter Publishing, a Science, Technology, and Medicine (STM) publisher of professional books and scholarly journals in Boston, Massachusetts. Additionally, Kathleen cares for her 16-year-old son, who was diagnosed with Nephrotic Syndrome at 20 months. Randy is an interventional radiologist with his master’s in molecular biology living in Medford, New Jersey, who cares for his son who was diagnosed with focal segmental glomerulosclerosis. Kathleen and Randy will be facilitating Steering Committee calls and communication moving forward. Please join us in welcoming Kathleen and Randy as the inaugural NKN Steering Committee Co-Chairs!
NephCure in the News September 22, 2014 by Lauren Eva PatientCrossroads Launches New Patient Registries The new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program San Mateo, Calif. (PRWEB) September 04, 2014 PatientCrossroads announces the launch of five new patient registries on behalf of leading rare disease advocacy organizations. The new registries are sponsored by organizations originally selected by the NIH to participate in its Global Rare Diseases Registry and Repository (GRDR) pilot program. Five New Patient Registries Launch Through the PatientCrossroads Program include: The Barth Syndrome Foundation, Foundation for Sarcoidosis Research, Lymphangiomatosis and Gorhams Disease Alliance, NephCure Kidney Network and PSC (Primary Sclerosing Cholangitis) Partners Seeking a Cure registries have been launched using the PatientCrossroads registry platform. Read more>> ‘A rare young lady’: Despite illness, girl handles life like a champ By Isaac Groves / Times-News Published: Wednesday, September 10, 2014 at 05:31 PM. GRAHAM — At age 6, Brandi Chrisp is a lively, sweet, smart, talkative, bold girl without a shy bone in her body and, honestly, one of the cutest kids you will ever meet. “I really like to play and sing,” she said. “And my favorite thing is going out to eat with my family.” She has also been hospitalized several times in the past year with a rare kidney problem, and she and her family are raising money to fund research to help people like her. “I have nephrotic syndrome,” she said. Read more>> Iowa-ISU backers running for bragging rights and charity Posted Online: Sept. 10, 2014, 9:39 pm Roughly 100 participants – most as part of relay teams – will run a 125-mile rout from Ames to Iowa City beginning today, September 10, and ending on tomorrow. Along with the bragging rights aspect, the event is also a fundraiser that benefits NephCure Kidney International. Read more>> ‘We Have a Long Road Ahead of Us’ 10-Year-Old Union Boy Lives With Rare Kidney Disease Posted: Wednesday, September 17, 2014 6:32 pm By Karen Cernich, Feature Writer Sitting on the living room floor of his Union home building a toy car out of Legos, Bradley Scott looks like an average 10-year-old, but to doctors treating him for the rare kidney disease FSGS, he’s something of a medical mystery. “He’s been rewriting the medical books since he was a baby,” Bradley’s mom, Amanda Scott, remarked. “I think every specialist that we’ve seen says he’s rewriting the medical books.” Read more>> Northern VA Home Improvement Company Supports Fairfax County Public Schools PRWeb | September 20, 2014 Moss Building and Design, a family-owned remodeling company in Fairfax County, is always looking for ways to give back to the community they work and live in. Giving back to the local community is an important goal of the remodeling company whose efforts include school sponsorships as one of the many ways they give back. Moss’ community involvement also includes sponsoring local golf tournaments, supporting the local NephCure foundation, building the haunted house structure for Bradley Farm Haunted House, and even rebuilding the roof of the dug-outs at Chantilly Park for Chantilly Little League. Read more>>
Rival Game Relay Raises Money and Awareness for NephCure September 19, 2014 by Lauren Eva RGR Organizers Kate and Mike Maurer Mike and Kate Maurer are runners who came up with an inspired idea and organized a great event for a great cause, but they’re more than that: they’re parents to a wonderful little boy named Alex. Five-year-old Alex is active and energetic, he loves climbing and running…when he’s feeling well enough to play like other five year olds. Alex has Nephrotic Syndrome, a condition neither of his parents had even heard of before he was diagnosed. Ultra-runner Troy Thompson Mike and Kate know the trials of managing and living with NS, and like tens of thousands of others rely on breakthroughs in medical research to find better treatments and a cure for their son. They decided they needed to do something. As avid runners having completed numerous races of distances ranging from 5k to marathon, and team relays of 212 miles, they decided to blend their love of running with their desire to fundraise and created a 124-mile race called the Rival Game Relay. Capitalizing on a centuries-old Iowa rival between the University of Iowa Hawkeyes and the Iowa State Cyclones, they timed their race to coincide with the annual Iowa/ISU football game. Eleven teams registered to complete the course beginning in Ames, IA, Cyclone territory, and finishing just outside of Iowa City, IA, land of the Hawkeyes. Several teams were comprised of eight or more runners who ran various legs, “ultra” teams contained 5 runners or less, and ultra runner Troy Thompson completed 102 of the 124 mile course on his own! NephCure Kidney International thanks the Maurers and all of the runners who participated in the inaugural Rival Game Relay event. The 2014 RGR trophy went to the ISU Cyclones NephCure and the RGR team up to fight kidney disease! Post-race festivities under the RGR tent
NephCure Kidney International Featured on HealthPopuli.com September 9, 2014 by Lauren Eva Many thanks to Health Economist and Influencer Jane Sarasohn-Kahn for her profile of NephCure Kidney International on her wildly popular blog, Health Populi. We had a great time discussing the NKI mission, Patient Powered Research Networks, ringing the opening bell of the NYSE, and the online future of NephCure. An excerpt from the opening paragraph appears below. We encourage you to read, comment, and share the entire article here. Thanks to everyone for your support! The burden of chronic kidney disease (CKD) is growing, with one in 10 U.S. adults having some level of CKD. End-stage renal disease (ESRD) is the last phase of CKD, when dialysis or an organ transplant are required. Nephrotic syndrome is one of the most common forms of CKD, and focal segmental glomerulosclerosis — FSGS — is the fastest-growing cause of nephrotic syndrome in children, and the second-leading cause of kidney failure in children.
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!
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.