Community Cafe Kick-off! January 21, 2015 by Kylie Karley NKI is kicking off its Community Café tour! Visiting cities like Stamford, CT, Birmingham, AL, and Miami, FL., there is sure to be a café near you. Click here to see when and where these FREE patient education seminars are happening. Don’t miss this chance to get up close and personal with leading experts in the field while enjoying kidney-healthy food. REGISTER for Stamford Cafe on Feb. 4th REGISTER for Birmingham Cafe on Feb 28th REGISTER for Miami Cafe on March 7th
2014: The Year in Review December 31, 2014 by Lauren Eva 2014 has come to an end and what a year it has been! We can’t help but look back and reflect on all the changes, including the ups and downs, 2014 brought to us. One of the biggest happenings of the year was our rebranding from the NephCure Foundation to NephCure Kidney International (affectionately known as NKI). As we officially expanded our vision and focused our priorities, we also changed leadership, and welcomed Mark Stone to the role of acting Chief Executive Officer. Under the umbrella of our new identity, we launched the new NKI website, www.nephcure.org. We are thrilled to continue to get feedback from YOU that the site is easy to navigate, informative, and appealing. Keep your comments and suggestions coming! Along with the website launch, we simultaneously released our updated logo and brand. What could be more exciting than all that? Ringing in our new identity, quite literally, during the ceremonious ringing of the opening bell at the New York Stock Exchange on August 15. Internally, we worked smarter – and harder – throughout the year to roll out new programs and update current offerings in the hopes we would better serve you, our community. Highlights include: Reimagining and reformatting our Lunch and Learns. Now called Community Cafes, we’ve condensed and streamlined the timeframe, while also allowing for more time for attendees to interact and ask questions. We are excited to offer more Cafes than ever before in 2015. Envisioning and launching a brand new NephSpace, our online support community for patients, caregivers, family members, and friends of those suffering from Nephrotic Syndrome on a more robust, user-friendly platform. Stop by and say Hi! With your help, our launch of STAND UP & BE COUNTED through social media raised $12,000 in two weeks. Give yourselves a HUGE round of applause. In the fall, we premiered CureMakers, our monthly-giving membership program and welcomed many new members to the NKI family For the first time EVER we held a 24-hour giving campaign on Giving Tuesday, November 25. On that day, each donation made was matched, enabling us to fundraise more than $34,000 in one day. Affirming our commitment to patient-powered research we launched the NephCure Kidney Network (NKN), NephCure’s patient-powered research network, which is a registry of data donated by patients with the diseases that cause primary Nephrotic Syndrome. NKI also provided funding of the CureGN consortium, and presentation of the NKI patient-powered research roadmap during Kidney Week in Philadelphia, Pa. You can now learn more about clinical studies near you with our new, interactive Clinical Research map on www.nephcure.org. Our philosophy and methods involving community fundraising have shifted from a walk-centric model to one that focuses on celebrating the individualism of each family, creating different types of events based on YOUR wants and needs. Our model will now stand to offer fun, soul enriching experiences and foster a sense of community, creating the best environment to raise funds to accelerate finding new treatments and ultimately, a cure. We will sustain this through 2015 with the addition of full-time, regional directors strategically located throughout the US. We celebrated many successful events throughout 2014, including walks, nephletes-sponsored events, community events too numerous to mention, co-hosting the Podocyte meeting in Freiburg, Germany, and another amazing year at the Pig Jig in Tampa, Florida and Countdown to a Cure in NYC. As we look to 2015 and beyond, we look forward to expanding to include new events across the US and internationally. As we bid goodbye to 2014 and welcome 2015 with open arms, we want to say thank you. It is because of you, our patients, caregivers, families and friends, and your constant tenacity in facing adversity, that we are pleased to embrace change. You inspire us. We can’t do this without you. We look forward to continuing this journey with you. Happy New Year!
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.”
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.
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!
Claritas Genomics Launches Convenient Genetic Testing Option For Nephrotic Syndrome Patients September 24, 2014 by Lauren Eva On September 11, 2014, Claritas Genomics in Cambridge, MA, announced the creation of its newest genetic screening panel, which tests gene variants commonly associated with steroid resistant Nephrotic Syndrome in children. The test uses next-generation gene sequencing techniques to detect mutations in the 28 most common gene variants associated with Nephrotic Syndrome, making it the largest genetic panel for any pediatric kidney disease. Typical candidates for this genetic test include: 1) pediatric patients less than 12 months old; 2) pediatric patients that do not respond to steroid therapy; 3) patients with a family history of Nephrotic Syndrome; 4) pediatric patients with features of FSGS; and 5) patients who have congenital malformations associated with Nephrotic Syndrome. In a time where healthcare is becoming more patient centric, as opposed to disease centric, genetic screening may lead to more ‘personalized’ treatment based on the characteristics of a patient’s disease profile. Information about genetic underpinnings of Nephrotic Syndrome may inform what drugs are used for initial treatment, provide improved information for patients and families about the likely clinical course of disease, could improve the selection of appropriate transplant donors and provide opportunities for genetic counseling for other family members. “This is the start of an exciting new era in understanding genetic factors that play a role in the onset and progression of at least some cases of Nephrotic Syndrome. NephCure Kidney International is proud to have supported the research at Boston Children’s Hospital that led to the development of this commercial application,” says Marilyn Hailperin, National Director of Research for NephCure. “Clear guidelines for when to seek genetic testing and the impact on patient treatment still need to be developed, but the availability of tests such as ClariFocus will help to advance scientific knowledge that will lead to better therapies.” Patients and their family members should talk with their nephrologist about this new test. It is only available with a physician order at this time.
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.
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!