Advocacy in Action – Nephrotic Syndrome Research Funding Support Letters March 25, 2016 by Kylie Karley Thank you to all of you who wrote to your Senators and Representatives asking them to support funding for Nephrotic Syndrome and FSGS research! Through your efforts, appropriations letters were sent to relevant subcommittee chairs in the House and Senate encouraging them to increase funding for these diseases. Four Senators signed the Senate letter and 27 Representatives signed the House letter. Background Each year, Congress decides how much federal funding should be applied to medical research activities and provides guidance to the National Institutes of Health (NIH) on what conditions legislators are particularly interested in. Recently, Members of Congress have been deciding on the level of NIH funding for fiscal year (FY) 2017 and crafting the accompanying list of research recommendations. As a result of grassroots outreach, the community of individuals affected by glomerular diseases has educated many Member of Congress who have become champions on research and patient care issues. House Letter On behalf of the community, Congressmen Ryan Costello, Ted Deutch, and Alcee Hastings recently circulated a “Dear Colleague” letter on Capitol Hill that voices strong support for advancing research into FSGS and related conditions at NIH. We asked the entire NephCure community to encourage their representatives to sign on to the letter and the response was overwhelming! Click here to see the letter and all 27 signatories. Senate Letter On the Senate side, Senator Debbie Stabenow lead a letter to the Defense Appropriations Subcommittee asking them to include FSGS as a condition eligible for study in the Peer-Reviewed Medical Research Program in the Fiscal Year 2017 Defense Appropriations Bill. Click here to read the letter and see the signatories.
Apply to be an NKN Steering Committee Member! March 15, 2016 by Kylie Karley We’re looking to expand representation on our NephCure Kidney Network Patient Registry Steering Committee! Are you interested in moving research forward? Looking for a way to give back in a meaningful way? Interested in connecting with others impacted by Nephrotic Syndrome? NKN Steering Commitee 2015 The NephCure Kidney Network is a patient registry containing patient-reported information about living with Nephrotic Syndrome. The NKN is governed by patients, patient parents, patient advocates, clinicians, researchers and representatives from industry, all working together to advocate for patients and families. The group is also charged with ensuring that high quality data is being collected and utilized properly for the research community. This group, known as the Steering Committee, meets regularly (via phone) to discuss patient recruitment and retention, research priorities, and other topics relevant to the success of the NKN. The collective perspective of the Steering Committee members helps maintain a patient-centric focus throughout all the NKN-initiated activities. If you are interested, please contact; Chelsey Fix at cfix@nephcure.org or 610-540-0186 ext 19 Applications will be accepted until April 15th, 2016 Please consider the following criteria when applying: Nephrotic Syndrome patient, parent, or caregiver OR clinician that regularly interacts with NS patients OR researcher with strong interests in NS (from an academic institution or pharmaceutical industry) SC Members must be able to commit to a monthly conference call held on a weeknight. Occasionally, 2 calls may be held in the same month. SC Members must be able to use the technology associated with participating in a conference call Patient members must be enrolled in NKN Patient Registry SC Members must have an active email address and be willing to communicate via email regularly
NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness March 3, 2016 by Lauren Eva FOR IMMEDIATE RELEASE Contact Information: NephCure Kidney International Erin Russell erussell@nephcure.org NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness {Melville, NY, March 2, 2016} – NephCure Kidney International and Sydney Levine, from Melville , NY, will be MARCHing to Awareness for the month of March. Sydney, 15, rang the closing bell at the NYSE yesterday to kick off her month long drive to promnote awareness of chronic kidney disease. Sydney’s brother, Matthew, 12, has Focal segmental glomerulosclerosis (FSGS), a rare kidney disease for which there is no cure. MARCHing to Awareness is a campaign aimed at promoting f National Kidney Disease Awareness Month and will target a different activity each day of the month. Yesterday, March 1, Sydney spoke in front of the Suffolk County Legislature and rang the NYSE closing bell. “Academics aside, I wanted to express my admiration for Matthew in the way he conducts himself. In spite of his condition, his positive attitude never waivers. I cannot remember the last time I didn’t see him with a smile on his face. Many kids would use his condition as a crutch or an excuse; he appears to use it as a motivator. I, for one, am inspired by this. I hope this month is just a start to finding a permanent solution to what Matthew and other kids like him are going through,” Chris Regini, Matthew and Sydney’s science teacher. For more information, please visit www.nephcure.org or search #KidneyAwarenessMonth NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure. ### [Best_Wordpress_Gallery id=”10″ gal_title=”#KidneyMonthAwareness”]