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.
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
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
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.
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.
San Fran Bay Area Community Cafe – November 1, 2014 October 7, 2014 by wpengine Community Café – Connections for a Cure Coming to the San Francisco Bay Area Soon! Date: Saturday, November 1, 2014 Time: 9:30 AM – 1:00 PM (PST) Place: Stanford Park Hotel 100 El Camino Real Menlo Park, CA 94025 United States Do you live in the San Francisco Bay Area or surrounding areas and have questions about living with FSGS/Nephrotic Syndrome? Register for our FREE Community Café Patient Education Seminar in Menlo Park on November 1st because knowledge is POWER and connecting with others brings HOPE! PLEASE REGISTER by clicking this link: https://nephcure.org/get-involved/nephcure-community-education/
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.