Become an Advocate This March January 29, 2015 by Lauren Eva Breaking News! NephCure will be accompanying patients and their families to Washington, D.C. on March 11-12 (World Kidney Day!) to speak directly with your legislators in Congress and ask for more government funding for FSGS and NS research. Would YOU like to STAND UP & BE COUNTED in Washington, DC.??As one of the millions of Americans affected by chronic kidney disease, your voice and your story matters. Please email jmartin@nephcure.org to express your interest and get on our list so we can set up meetings with your legislator! TO REGISTER: http://support.nephcure.org/advocacyday
NEW Funding Source for FSGS January 9, 2015 by Kylie Karley President Obama signed the appropriations package to fund federal agencies through fiscal year 2015 (ending September 30, 2015). This includes allocations for NIH and other health care funding agencies such as the Department of Defense (DoD), which oversees the Peer-Reviewed Medical Research Program (PRMRP). For the first time, FSGS is listed as a condition eligible to study in the PRMRP. Because FSGS is listed, FSGS researchers have an opportunity to compete for grants from a NEW funding source. This is HUGE. This opportunity is a direct result of NephCure’s professional and volunteer advocacy work in Washington, D.C. and the efforts of our staff to work collaboratively with scientific partners at NIH and the VA to highlight the benefits of studying this disease through the DoD program. The total amount in the PRMRP program is $247.5 MILLION! UPDATE: The Program Announcement was released April 17 for the 2015 cycle. There are five funding mechanisms available. Click here for details.
Partnering For Cures Conference Stimulates Innovation December 9, 2014 by Kylie Karley In mid-November, Mark Stone, NephCure Kidney International Acting CEO, attended the sixth annual Partnering For Cures Conference in New York City. The Partnering For Cures Conference is a patient-focused event that brings together leaders from all sectors of medical research to foster collaboration – collaboration that will lead to medical discoveries, and, ultimately, treatments and cures. Partnering For Cures is hosted by FasterCures, a Washington, DC-based center of the Milken Institute. FasterCures hosts the conference each year to convene groups like NephCure to identify partnership opportunities and advance outcomes-driven medical research. At the core of Partnering For Cures is the idea that the cultivation of cross-sector relationships will lead to collaborative efforts necessary for the development of new therapies. This year’s conference focused on the importance of patient-reported data and how determined patients are improving and accelerating the search for cures. “Patient empowerment is at the heart of what we do at NephCure,” says Mark Stone. “Conferences like Partnering For Cures help groups like NephCure influence research innovations and remind us of the most important aspect of our research – our patients.”
Cuba Gooding Jr. Partners with NephCure to Find a Cure! November 25, 2014 by Lauren Eva Cuba Gooding, Jr. may be best known for his roles as a high-energy football player, dedicated lawyer, or honor-bound solider. Off-camera the beloved actor and father of three is stepping into a new role: advocate and activist. The Academy Award® winning actor is partnering with NephCure Kidney International to raise awareness about kidney disease. “Kidney disease is the ninth leading cause of death in the United States, but is one of the most underfunded in research. FSGS (Focal Segmental Glomerulosclerosis) and Nephrotic Syndrome are some of the most devastating kidney diseases affecting children and adults. NephCure is the only organization in the world focused on raising money for research to get better treatments and a cure for these diseases. When I learned about these conditions I knew I had to do something. I’m proud to partner with NephCure to help them raise awareness,” Mr. Gooding said. Mr. Gooding will join NephCure at Countdown to a Cure, our Annual Fundraising Gala at New York’s Chelsea Piers on December 4. A select number of tickets are available for purchase until December 2 by clicking on this link. Can’t come to the event? You can still join the cause and support NephCure in their quest to end debilitating forms of kidney disease, FSGS and Nephrotic Syndrome. Simply text the word “CURE” along with your donation to 50155, or visit http://www.support.nephcure.org/TeamCuba to pledge your support today. To read the full press release, click here.
Seeking Volunteers for NEW Clinical Trials Ambassador Program November 5, 2014 by Kylie Karley Have you ever participated in a clinical research study? Are you willing to share your experience with others? If so, then you would make a fantastic addition to our newest initiative to find better treatments and a cure for Nephrotic Syndrome: the Clinical Trials Ambassador Program! NKI is seeking volunteers from across the country to act as Ambassadors to other patients and the medical community. Ambassadors will spread knowledge and information about the importance of clinical research in the search for better treatment options and a cure. Ambassadors can expect to spend between 5 and 10 hours a month volunteering in various ways that will help spread awareness and knowledge about clinical research. If you are interested in learning more about the Clinical Trials Ambassador Program, contact Chelsey Fix at cfix@nephcure.org.
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 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.