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!
Countdown to a Cure ’14 – THANK YOU from NephCure! December 18, 2014 by Lauren Eva Another Countdown to a Cure has come and gone, but CDTAC 2014 was anything but ordinary. From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt dedication of NephCure’s inaugural Humanitarian of the Year award to Michael Levine, Countdown to a Cure 2014 was a night to remember. The real success of Countdown , however, has always been measured by the generosity of many hundreds in attendance who consistently show support for NephCure in our quest to accelerate research to find better treatments and a cure. Auction bidders were excited, Fund a Cure donations exceeded expectations and along with plenty of paddle raising, many participated in a game of “Heads or Tails,” willing to get a little silly for the cause. Those of us at NephCure are incredibly grateful, and we would never be able to express our gratitude enough. There are so many people, without whom, this night would not have been so successful. First, we would like to express heartfelt appreciation to Committee co-chairs Rich Genatt and Michael Levine. Michael and Rich are persistence personified, and their leadership of our Countdown committee is unmatched. Speaking of the Committee, a very special thanks to every member of our Countdown committee for your unique and invaluable contributions. Another thank you to the Milligan Family, our 2014 Fund a Cure Honorees. Jennifer and Jarrett, your unwavering determination to spread awareness and your passion for finding a cure for all those affected by Nephrotic Syndrome is the picture of strength and courage in the face of adversity. Congratulations! Joining us in kicking off the evening was Michelle Williams, Grammy award winning singing sensation and host of Oxygen’s Fix My Choir. Michelle graciously took the stage to welcome everyone in attendance. NephCure would like to thank Ms. Williams and congratulate her on the release of her fourth album, Journey to Freedom, as well as her nomination for a Stellar Music Award. We are thrilled to continue to work with Ms. Williams as a future Ambassador for NephCure. NephCure would also like to thank special guest Cuba Gooding Jr. The Oscar® award winning actor took the stage in supreme fashion and delivered a wonderfully vibrant dedication to Michael Levine, presenting him with his Humanitarian of the Year award with passion and enthusiasm. Thank you for your support of NephCure, Mr. Gooding, and best wishes and congratulations on both the upcoming release of Paramount Picture’s “Selma,” and your role as O.J. Simpson in FX’s American Crime Story. Finally, thanks to YOU. To each of you reading this who’ve decided to STAND UP & BE COUNTED to fight FSGS and Nephrotic Syndrome. We can’t do this alone. We need you, we’re grateful for you, we thank you. Watch Videos Here: [huge_it_videogallery id=”3″]
NIDDK Tenure Track Position Opportunity for Nephrologists December 9, 2014 by Kylie Karley NephCure Kidney International is pleased to announce the development of a new nephrologist position at NIDDK. A tenure track position is available for a nephrologist to establish an independent research program in the Kidney Disease Section, Kidney Diseases Branch, NIDDK, NIH. The search is particularly focused on individuals studying glomerular physiology or glomerular disease. Research in this section focuses on mechanisms and therapy of glomerular disease under the leadership of Jeffrey Kopp, MD. Position Requirements MD degree Demonstrated expertise and a record of achievement in basic or clinical research Current board certification in Nephrology Excellent clinical nephrology skills Have or be eligible to obtain a current US medical license. The position will be supported with independent resources commensurate with experience and programmatic needs, including positions for clinical staff, pre-doctoral and post-doctoral fellows, and a budget for consumables and equipment. Interested applicants should submit a single PDF document containing a Curriculum Vitae, a list of publications, a summary of research accomplishments, a plan for future research including a core research question, the names and contact information of three people who are submitting letters of reference, and copies of no more than 3 publications. All materials should be emailed to: Dr. Mark Knepper, Chair, Kidney Disease Branch Search Committee c/o Lisa Swearinger SwearingerL@mail.nih.gov
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.”
Kidney Healthy Holiday Recipe Swap and Chat December 4, 2014 by wpengine What’s for Lunch? What’s for Dinner?? What a STRUGGLE…right??? Add in the challenge of dietary restrictions due to Nephrotic Syndrome AND the Holidays!! It can become maddening. The NKI NephSpace Healthy Holiday Eating Recipe Swap and CHAT is coming up on Tuesday December 9th at 8:30 PM Eastern time and it’s just what you need to take a step in the right direction and store away a nice collection of recipes. It’s as easy as pie to join us for the chat: Email patientadvocate@nephcure.org to register. In the subject line, simply type NS Chat and in the message let us know if you have any specific recipe requests or questions about how to connect. If you’ve not had a change to do so, you’ll need to sign up for a NephSpace account Here. Leave us a note on the CHAT page and let us know what recipe you are looking for. Just show up on Tuesday December 9th at 8:30 PM Eastern time with a recipe to swap, share or something you want to know about making an old favorite, more kidney friendly. Joining us for the chat will be the Education and Engagement team, Kelly, Sandie and Lauren, along with Kirsten Michel our intern. Our Very Special Guest will be Daniella Toto, a Nutrition Major at LaSalle University in Philadelphia, who will be help guide the chat and provide tips on swapping out some traditional recipes with equally tasty kidney-friendly fare! Looking forward to talking with you online!! NKI Department of Education and Engagement