NephCure Kidney Network Annual Report Release May 8, 2015 by Kylie Karley We are pleased to provide you with a copy of the first Annual Data Report of the NephCure Kidney Network Patient Registry. The 2015 Annual Data Report summarizes the data provided by 350+ Registry participants collected from March 2014 to March 2015. Click here for the full report Please contact registry@nephcure.org with any questions.
Support NephCure on #BTIGCharityDay – April 28, 2015 April 27, 2015 by Lauren Eva BTIG Commissions for Charity Day is Tuesday, April 28, 2015. SUPPORT NEPHCURE KIDNEY INTERNATIONAL on that day by asking your broker to trade through BTIG. Just ask that the trade support NephCure Kidney International. It will not cost you or your broker anything, commissions generated from the trades executed by BTIG on Charity Day are donated to charities nominated by BTIG clients. NKI is one of those charities! “BTIG Charity Day has grown into a global initiative. As a firm, we are passionate about the success of our annual event and are committed to supporting meaningful causes,” said Steven Starker, Co-Founder of BTIG. Since the event’s inception in 2003, BTIG’s clients, celebrity partners and employees throughout its U.S., London, Hong Kong, Singapore and Sydney offices, have raised more than US$30 million for hundreds of charitable organizations around the world, including over US$5 million from the May 2014 event last year. “We are always impressed by the number of well deserving organizations that our clients and celebrity partners support and bring to our attention each year. It’s an honor to be a part of an event that makes such a significant impact on improving opportunities for children and others worldwide,“ said Scott Kovalik, Co-Founder of BTIG. 2015 BTIG Charity Day Preview Video: https://vimeo.com/120527307 If you have questions about how to designate NKI as your beneficiary – please call NKI at 610-540-0186 ext. 24. About BTIG BTIG is a global financial services firm specializing in institutional trading, investment banking and related brokerage services. With an extensive global footprint and more than 475 employees, BTIG, LLC and its affiliates operate out of 13 cities in North America, Europe and Asia Pacific. BTIG offers execution, expertise and insights for equities, equity derivatives, ETFs, fixed income, futures, commodities, foreign exchange, interest rates, credit, and convertible and preferred securities. The company’s core capabilities include global sales, portfolio, electronic and outsource trading, investment banking, prime brokerage, capital introduction, corporate access, research and strategy, commission management and more. Disclaimer: https://www.btig.com/Disclosures.aspx
NephCure’s Richard Fissel Selected as Member of the Kidney Health Initiative’s Inaugural Patient and Family Partnership Council April 22, 2015 by Lauren Eva Announcing Kidney Health Initiative’s Inaugural Patient and Family Partnership Council Members* In order to advance KHI’s efforts to improve patient safety and promote the development of the therapies for diseases that affect the kidneys, KHI recently communicated to the membership the opportunity to serve on the inaugural Patient and Family Partnership Council (PFPC). The established PFPC will assist the Board of Directors and KHI’s various workgroups in providing strategic guidance about how to engage and include patients, their families and care partners in KHI activities, including but not limited to: 1. Advise KHI members regarding patient involvement in their project proposals 2. Outline opportunities for patients to serve once a project has been endorsed 3. Identify patients to serve on project workgroups 4. Collaborate on developing patient centered project(s) to submit for KHI endorsement The KHI Board of Directors have reviewed the submitted applications of many well-qualified candidates for the Patient and Family Partnership Council and have selected the inaugural members. 1. Ms. Celeste Castillo Lee, Chair and Liaison to KHI Board of Directors (Vasculitis Foundation) 2. Ms. Denise Eilers, BSN, RN (Home Dialyzors United) 3. Mr. Richard D. Fissel (NephCure Kidney International) 4. Mr. Kevin J. Fowler 5. Ms. Terry F. Litchfield 6. Mr. Sam Pederson (American Association of Kidney Patients) 7. Ms. Roberta L. Wager, MSN, RN (American Association of Kidney Patients) 8. Ms. Caroline Wilkie (National Kidney Foundation) The PFPC will host its first meeting in May in conjunction with the Third Annual KHI Stakeholders Meeting. *Text provided by the American Society of Nephrology
NKN Steering Committee: Now Accepting Applications April 17, 2015 by Kylie Karley The most unique aspect of the NephCureKidney Network Patient Registry is that it is governed by a group of patients, patient parents, patient advocates, clinicians, researchers and representatives from industry who work together to ensure that the needs of the NS patient community and the NS research community are met. Each month this group of 18 individuals meets via conference call to discuss topics focusing on recruitment and retention, patient engagement, data collection, and medical profession engagement. Because each group of stakeholders can voice their perspectives on the call, it is ensured that the NKN registry will remain both patient centered and a valuable tool for the research community. Want to be involved? If you are interested, email Joanna Dauber at jdauber@nephcure.orgor call 610-540-0186 x 36. Applications will be accepted until April 27th, 2015.
$90 Million Offered In Latest Call For Pragmatic Clinical Studies April 10, 2015 by Kylie Karley The Patient-Centered Outcomes Research Institute (PCORI) is now accepting Letters of Intent (LOIs) through their latest funding announcement under the Pragmatic Clinical Studies initiative, which is offering up to $90 million in support for projects evaluating the effectiveness of different care options in “real-world” settings. PCORI will provide up to $10 million in total direct costs per study. For the LOI deadline and other key dates associated with the latest pragmatic studies funding opportunity, visit the full funding announcement. PCORI awarded $64.1 million in February to fund the first five studies selected through this initiative and their Board of Governors will consider another slate of potential awards at its next meeting on Tuesday, April 21.
Levine Family is STANDING UP TO BE COUNTED! April 10, 2015 by Lauren Eva The Levine family just took great steps to STAND UP & BE COUNTED. Meeting with the Congressman, they took just another step for the best representation and advocation for those with Nephrotic Syndrome and FSGS. Sydney Levine, who recently started a viral social media campaign with the #SUBCselfie project, caught the attention of the Congressman as well as many famous, powerful voices across the country. As a result of the Levine family, who never stop trying to find ways to beat FSGS for son and brother, Matthew, the right people are becoming aware and joining in the fight. The Congressman will be taking this to appropriations on the hill next week!
Why YOU Should Attend a Community Cafe April 6, 2015 by Kylie Karley We know that spring can be extremely busy for everybody, but we wanted to share with you the top 10 reasons why YOU and your family should attend a local Community Cafe Patient Workshop! REGISTER for one in your area! THE TOP 10 REASONS TO ATTEND A COMMUNITY CAFE: 10. Access to leading experts in the Nephrology world 9. Enjoy kidney friendly, low sodium food 8. Learn what 3 questions to ask your nephrologist at your next appointment 7. Find out what events are happening in your area 6. Get the inside scoop on research 5. Meet others and stop feeling alone 4. Hear the do’s and don’ts from a renal dietitian 3. Empower yourself with scientific knowledge 2. Become part of a global community working towards a cure 1. You owe it to yourself to know everything about what’s happening UPCOMING COMMUNITY CAFE SCHEDULE Ann Arbor- May 14
Director of Research attends RDCRN Face to Face Meeting April 1, 2015 by Kylie Karley Marilyn with Dr. Pam McInnes – Deputy Director, National Center for Advancing Translational Sciences (NCATS) 1/1/2015 – This week, Marilyn Hailperin, NKI’s National Director of Research attended the Rare Disease Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups (CPAG) face-to-face meeting in Rockville, MD. The meeting included patient advocacy groups that are associated with the rare disease consortia funded by the RDCRN (a program of the NIH), including the Nephrotic Syndrome Study Network (NEPTUNE).
Check out our Peer to Peer Programs! March 19, 2015 by Lauren Eva One of the most important things we do at NephCure is connect people to others experiencing similar challenges of living with chronic kidney disease. Whether it be understanding the complexity of Nephrotic Syndrome/FSGS, the side effects of medications, frequent trips to the nephrologist or navigating your way through labs and diets, it can be incredibly overwhelming. At NephCure, we understand the value of connecting patients and caregivers with others to share experiences, frustrations and, better yet, good news! That’s why we’re expanding our Peer to Peer Support Program. In addition to our online support community, NephSpace, we offer our Patient to Patient Connections (P2PC) program. P2PC is a worldwide organized network of patients and caretakers whose lives have been affected by the diseases causing Nephrotic Syndrome and FSGS. It is designed to connect individuals via email or phone based upon any or all of the following: diagnosis, symptoms, and complications, age of individuals or sometimes specific geographical area. Our volunteer patient/caretaker ambassadors are committed to offering support and sharing their experiences with others who are facing similar challenges. You can learn more or be connected with a patient/caretaker ambassador here https://nephcure.org/?p=1390. We encourage you to take time to make connections with others in similar situations as we know you will benefit greatly from the support and sharing! If you are interested in becoming Volunteer Patient/Caretaker Ambassador please visit https://nephcure.org/get-involved/become-a-volunteer/ or contact Kelly Helm at khelm@nephcure.org.
Legislative Action Alert March 17, 2015 by Lauren Eva On the heels of our very successful Advocacy Day, comes this Alert. Please take action before end of day on Friday, March 20 Request that House and Senate Members sign on to letters supporting FSGS research Members of the House and Senate have drafted letters urging their colleagues in Congress to support medical research on focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome (NS) through the National Institutes of Health and the Department of Defense. Contact your two Senators and your House Representative to ask them to sign on to the letters. If a large number of Members of Congress express support for research on FSGS/NS, federal agencies will respond by continuing to prioritize their FSGS/NS research portfolios. To determine your two Senators: Visit www.senate.gov, and select your state in the drop-down menu on the top-right corner of the webpage. Click ‘go.’ Your two Senate offices will appear with their DC office phone numbers and webpages. To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and a link to the webpage of your House office will appear. You may need to enter your full address if more than one Representative is listed. Action: Call your two Senate offices and your Representative’s office. Tell the person that answers the phone that you are a constituent. Ask to speak with the health staffer and deliver the message below. If you can’t reach the health staffer, it is OK if you deliver the message to someone else or to a voicemail. Ask if you can send a follow-up email and request an email address. Send a follow-up email based on the message below. Recommended Message – [brackets] indicate where to insert specific information: “I am a resident of [CITY]. [Cite any meetings you may have had with the office.] I am contacting you to request that your office sign on to a letter supporting research on FSGS. The closing date is March 23rd. [In the Senate: “The letter is led by Alex Graf in Senator Stabenow’s office”] or [In the House: “The bipartisan letter is led by Dante Cutrona in Rep. Costello’s (R-PA-6) office and Joel Richard in Rep. Deutch’s (D-FL-21) office.”] FSGS and the diseases that cause nephrotic syndrome are devastating kidney diseases. FSGS is a leading primary glomerular cause of end-stage renal disease. [Briefly tell your story as a patient, parent, caregiver, etc.] I hope you will sign on to the letter supporting FSGS research before March 23rd. Please keep my posted on the actions you take. You can reach me at [phone and/or email].” Thank you! Feel free to forward this information to friends and family members as well. Every call helps!