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”]
Advocacy Alert! Ask your Senators to sign FSGS funding letter February 29, 2016 by Kylie Karley Contact both your Senators and ask that they sign on to Senator Debbie Stabenow’s (D-MI) letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2017 appropriations process (Urgent – Deadline for Signatures is March 11) Background Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You) As a result of grassroots outreach, the Senate has recognized FSGS as a condition eligible for study annually for a number of years. This support allows FSGS researchers to compete for nearly $278 million in federal research funding each year. Senators are currently working on the FY 2017 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. Being included on the list one year is no guarantee of being included again in the next year. At this critical time, please reach out to the offices of your Senators and ask that they “sign on to Senator Debbie Stabenow’s letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” in the DOD PRMRP’s eligible conditions list for FY 2017.” Click here to read the letter. Take Action Recommended: Copy and paste the email template below, add your info (where prompted) and send it to NKI’s Washington Representative Phil Goglas at goglas@hmcw.org . Phil will forward your e-mail on to the appropriate staff person in your Senators’ offices on your behalf. or Reach out yourself to the Health Legislative Assistant in the Washington, DC, offices of both your U.S. Senators and ask for their support. To identify the contact information for your Senators’ Health LAs, simply go to Senate.gov and select your State. If you call the office (the 202 number), the staff will tell you the name of the Health LA and let you leave a voicemail (you can use the message below as a script). E-mail is more effective, but the receptionist will not likely provide you with the Health LA’s e-mail address. If you would like to e-mail the Health LAs in the offices of your Senators, please contact Phil at goglas@hmcw.org. He will provide you with their name and e-mail address. Congressional deadlines are fast approaching, so you must reach out to your Senators this week (the first week of March) or early next week to have an impact. Email Template Dear Senator ____________, Senator Debbie Stabenow is currently circulating a Senate sign on letter in support continuing to include “Focal Segmental Glomerulosclerosis” (FSGS) in the list of conditions deemed eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) during the FY 2017 appropriations process. On behalf of FSGS impacted families across the state, please contact Sam Schuiteman in Senator Stabenow’s office at Sam_Schuiteman@stabenow.senate.gov or 4-4822 to join this important letter by COB Friday, March 11th. FSGS is a rare and devastating kidney disease that is a leading cause of end-stage renal disease (ESRD). Nearly 30,000 veterans suffer from ESRD and an additional 3,000 veterans are expected to reach ESRD each year with significant health disparities among African American due to variants of the APOL1 gene. In addition, researchers suggest there are new opportunities for investigating FSGS in the military population with respect to environmental exposures. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans. FSGS has been part of the PRMRP for some time, including FY 2016, and continued participation will lead to further scientific progress. [OPTIONAL: Briefly tell your FSGS story in 2-4 sentences] Thank you for your time and your consideration of this request. Sincerely, [Your Name] [Your Address]
Be Your Own Best Advocate February 15, 2016 by wpengine Hi, my name is Amanda, I’m an attorney, live in Chicago, and I have FSGS. When I was 26 I began gaining weight unexpectedly and a kidney biopsy a couple weeks later confirmed the diagnosis. Immediately I began steroid treatments, and responded well; however when we attempted to wean off the steroids, the symptoms returned. After another failed round of steroids, I temporarily lost my health insurance and was unable to see a doctor. Fortunately, I was able to eventually obtain insurance and then was quickly admitted to the hospital because the swelling was so extreme. I’ve been on Cyclosporine, Cellcept and now started Prograff and fortunately my kidney function has remained stable. Throughout my treatments, NephCure has been an important resource for me, grateful for the opportunity to interact with other patients and to talk to experts in the field. My friends & family think I am fierce – I won’t let anything stand in my way. Some people assume that a rare disease diagnosis would stop your life in its tracks. But I’ve learned that things that would have caused anger or provoked frustration in the past seem unimportant now. Life is way too short to spend fighting or being upset about the little things. My husband Al and I now spend time advocating, fundraising, and working tirelessly with NephCure to help fund the cure for FSGS. We know what we want and what we all want is a cure! We need more, we want more, and we want to give more. Won’t you join us in this fight? Sincerely, Amanda
The Unique Adult Experience Webinar December 1, 2015 by Kylie Karley “As far as I knew, kidney disease didn’t run in my family. Most important, I didn’t have time for kidney or any other kind of disease.” Dine Watson, author of the Washington Post article “Kidney disease? I was only 33 years old, and I felt fine” will be featured on our next webinar, The Unique Adult Experience. Diagnosed with FSGS in 1984, Dine’s story will resonate with all adults living with Nephrotic Syndrome and the related diseases. During this webinar, Dine will offer insight about all aspects of living as an adult with kidney disease, and also how to hope and how to find a community. Register now to reserve your spot! Hope to see you there! Questions? Contact Chelsey at 610-540-0186 ext. 19 or cfix@nephcure.org
Every gift has a story. November 23, 2015 by Lauren Eva Use new eCards to tell someone you love that you care about them.
2015 Countdown to a Cure – THANK YOU! November 20, 2015 by Lauren Eva We’ve said “hello” and “goodbye” to another Countdown to a Cure… From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt speeches delivered by NephCure’s beloved family, the Jones’ and honoree, Olympic athlete Aries Merritt, this event was truly the “Chance of a Lifetime” to make a difference in the fight against Nephrotic Syndrome. The success of Countdown has always been measured by the generosity of the many hundreds in attendance who consistently show support for NephCure and this year, our expectations were overwhelmingly exceeded, for which we could not be more grateful. You are changing the story. Energies were high and attendees were excited, lighting the way for one of the most successful galas in NephCure history. “Fund a Cure” donations blew expectations out of the water, bidding was at a high and the second annual game of “heads or tails,” brought a touch of silliness to an evening surrounding a very serious cause. Emcee, Moody McCarthy, along with “Asbury Fever,” a Bruce Springsteen Tribute band, kept the party going all night long with many moments filled with laughter, dancing and mingling. As always, we want to thank the committee who worked so hard to put this event together and the volunteers who generously gave up their time to help this event flourish into a huge success. The 2015 New York Countdown to a Cure raised over $750,000 and many left the event feeling inspired and hopeful. Finally, thanks to YOU. To each of you reading this who’ve decided to join us in this fight. We can’t do this alone. We need you, we’re grateful for you and we thank you.
NephCure Kidney International to Host First-Ever Fundraising Gala in Chicago October 8, 2015 by wpengine Chicago, IL (October 8, 2015) – Just one month until NephCure Kidney International’s (NKI) Chicago fundraising gala. This inaugural event will be held on Friday, November 6, 2015 from 7:30 PM to 11:30 PM at Architectural Artifacts, Inc., 4325 N. Ravenswood Ave, Chicago, IL. The event, themed “Crusade for a Cure” and sponsored by Rush University Medical Center, will bring together the most generous heroes of Chicago to raise money for research and finding a cure to the debilitating chronic kidney diseases Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). “We are thrilled to finally bring this fundraiser to Chicago,” said Jayne Drew, Regional Director for NephCure Kidney International. “The gala is in its 11th year in New York City and has raised more than $6 million. We believe we can have just as great of an impact here in Chicago.” Co-chairing the gala are Chicago natives and couple, Alap Patel and Amanda Schackart. “When Amanda was diagnosed with FSGS, our instant reaction was to learn as much as we can about the disease,” said Patel. “The problem, we soon realized, is that so little is actually known about it. This is why Amanda and I got involved with NephCure Kidney International. More research needs to be done on FSGS and Nephrotic Syndrome. More people need to be aware of these conditions, and the impact it has on millions of families across the US. We want to build a community where families affected by these diseases can know more and learn more from each other. We want to support a network of doctors who can discover more.” “We need more, we want more, and we want to give more!”, says Schackart. Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidneys. The result is that beneficial protein is spilled from the kidneys into the urine and is lost. Over time, this condition can result in renal failure and the need for dialysis or a kidney transplant. The cause of Nephrotic Syndrome and FSGS is not known, it can affect anyone, and there is no cure. FSGS is a leading cause of kidney failure in children. It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease. More than breast cancer. More than prostate cancer. Tickets prices to the gala start at $125 per person, with VIP table options available, and include local cuisine, libations, raffle, as well as a silent auction. For more information about NephCure Kidney International, to purchase tickets or inquire about sponsorship opportunities, please visit the event website here CRUSADE, or by texting “CRUSADE” to 52182, or email Jayne Drew at jdrew@nephcure.org. About NephCure Kidney International NephCure Kidney International (NKI) is a 501(c)(3) tax-exempt public charity established in 1999. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NKI is the only organization committed exclusively to supporting research to identify the cause, improve the treatment, and find the cure of the two potentially debilitating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). ### Media Contact: Jayne Drew jdrew@nephcure.org 267-261-4918
Atlanta NKI Walk Celebrates it’s 6th year September 26th. September 16, 2015 by wpengine Team Macy Ray The NephCure Kidney Walk returns for the 6th year to the Atlanta area, Saturday, September 26th. The walk brings together Atlanta area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Thrasher Park, 93 Park Drive in Norcross, GA. Registration opens at 9 and the walk begins at 10 a.m. Music and entertainment will feature local band Fatback Deluxe. Food and games for the children will be held afterwards, plus fantastic raffle prizes and a silent auction. There is no registration fee, but teams are encouraged to raise at least $1,500, with a total event goal of $32,000. Walk volunteers Michael and Alisan Parnes are one of the families leading this event in honor of their sons, Zion and Donovan. Both boys were diagnosed with FSGS in 2009. “This disease caused Zion’s kidneys to fail when he was only 6 years old. He spent a year on dialysis and had a kidney transplant at 7 years old. Donovan is still living with this disease and our hope is that better treatments or a cure will be found so that he will never have to endure kidney failure and transplant”, says co-chair Alisan. “This is our 6th year walking in honor of our boys and the thousands of others affected by this terrible disease.” Basketball stars Alonzo Mourning and Sean Elliot both suffered from FSGS. Elliott became the first player to return to the NBA after a kidney transplant, in the Spurs game against the Atlanta Hawks in 2000. Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidneys and the cause is not known. FSGS is a leading cause of kidney failure in children. It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease, more than breast cancer and prostate cancer. Some doctors believe kidney disease of this nature might be the next epidemic of our generation. We want to thank all of our sponsors and volunteers, including Oxygen Financial, Gas South, Atlanta Braves, Fat Matt’s Rib Shack, and Fatbuck Deluxe. A special thank you to the wonderful team at the Roswell Junior Woman’s Club for their ongoing support and volunteers for the event. To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/atlanta or contact Jayne Drew at jdrew@nephcure.org
Watch the Demystifying Research Webinar! July 21, 2015 by Kylie Karley Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it! We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered! CLICK HERE TO WATCH THE WEBINAR
Advocacy in Action: More Funding for FSGS Research! June 16, 2015 by Kylie Karley Remember When… Back in January, FSGS was officially added to the list of conditions eligible for research funding through the Department of Defense’s 2015 Peer Reviewed Medical Research Program (PRMRP). This opened up a new $247.5 million funding source for FSGS researchers. When NKI and our patient families visited Washington DC earlier this year, we advocated to keep FSGS on the list and to increase the funding available for research. More Good News: Last week, the Senate Appropriations Committee approved the 2016 Defense Appropriations budget including $31.2 million in additional funding for the Peer Reviewed Medical Research Program. FSGS made the list of eligible conditions again, so if the bill passes without changes, our researchers will have access to $278.7 million in 2016! What’s Next? The bill will have to be passed by the House and Senate and signed by the President before going into effect. We’ll be tracking it and keeping you updated as it moves through the legislative process. Thank You! Increased funding for research and including FSGS on the list of eligible DOD conditions were two of our “Asks” when we visited Capitol Hill. Thank you advocating in person, writing letters and emails, and making phone calls to increase government awareness of Nephrotic Syndrome diseases and the vital role that government funding plays in finding better treatments and cures! Keep it up and stay tuned for more opportunities to be an Advocate!