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
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
Chicago is Walking for a Cure this Weekend! September 17, 2015 by wpengine Co-chair Sue Rogers walks for her son. The NephCure Kidney Walk returns for the 9th year to Chicagoland this Sunday, September 20th. The walk brings together Chicago 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 Centennial Park, 1776 W. Centennial Place, Addison, IL. Registration opens at 9 and the walk begins at 10 a.m. Music, food, and games will be held afterwards, plus fantastic raffle prizes, including a pair of tickets to the inaugural Countdown To A Cure Chicago fundraising gala themed Crusade For The Cure on Friday, November 6th at Architectural Artifacts at 4325 N Ravenswood Ave., Chicago. The walk is open to the public, but registration is encouraged in advance at Chicago Walk. The NephCure Kidney Walk is especially meaningful to Romeoville resident and walk organizer Sue Rogers, whose son has been dealing with Focal Segmental Glomerulosclerosis (FSGS) for over 11 years. “I love the support I have found from parents I’ve connected with through the walk,” said Rogers. “Some have been through so much already with their children, including dialysis and a kidney transplant. I admire their strength. Just being able to talk to another mom who understands what you are going through helps me maintain my sanity when I question myself how I’ll manage to handle it all.” Chicago native Aries Merritt won the bronze medal in the 110m hurdles in Beijing at the world track and field championships last month, with less than 20 percent kidney function caused by FSGS – days before receiving a kidney transplant. 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. Start your team today! Team fundraising is a great way to get your friends, family, co-workers and neighbors involved. Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. Cannot physically make the event? Maybe you have a wedding on walk weekend. Or your son or daughter has a soccer game. Maybe you’re moving to a new house. We get it. Fall can be a busy time. But remember just because you can’t make it to walk day, doesn’t mean you can’t keep the tradition alive and make an impact by fundraising in support of NephCure Kidney International. Leave your footprint as a Virtual Walker. Please join in the fun & fundraising and setup a Virtual Walk Team and share with your friends & family on social media. We need everyone’s involvement. You will still be able to earn the commemorative Walk T-shirt! Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. REMEMBER – You can still Fundraise for your Walk team AFTER the walk is over for the remainder of 2015. So it’s not too late! Share your Team Fundraising Page & Photos on Social Media! Make sure you share frequently your page and event photos on Facebook, Instagram, Twitter and with your email lists. Use the hashtags #Selfies4NephCure #NKIWalk #Chicago A special thank you to Chicago Walk Co-Chairs Sue Rogers and Julia Bacarella – We are thankful for all that you do! To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/Chicago or contact Jayne Drew at jdrew@nephcure.org
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″]
Countdown To A Cure Calgary August 12, 2014 by Lauren Eva Countdown To A Cure Calgary successful in raising money and awareness for Rare kidney disease in Canada March 10, 2014 On March 8, The NephCure Foundation held a fundraiser to support Canadian research initiatives seeking the cause and cure for the rare kidney disease FSGS (Focal Segmental Glomerulosclerosis) and Nephrotic Syndrome. Countdown To A Cure, a Denim and Diamonds-themed reception and dinner featured an array of delicious foods, music, silent auction items and more. The event held at Silver Springs Golf & Country Club and attended by more than 120 supporters, raised more than $45,000 for Canada-based research initiatives. Through a partnership with the Kidney Foundation of Canada, every dollar raised from the event will be matched to support specific research programs in Canada. Andrea Galbraith of Calgary organized this first annual event. Andrea’s daughter, Sophia, was diagnosed with the rare kidney disease FSGS at age 2. Since 2010, Andrea has now raised more than $185,000 for research to find a cure for Sophia and others battling these terrible kidney conditions. In addition to Countdown, Andrea’s fundraising efforts have included running a 10k race with her brother, organizing the 2012-13 NephCure runs/walks and a special event in Ontario. “Andrea’s commitment to finding better treatments for her daughter’s disease impacts all families dealing with these kidney conditions,” said Henry Brehm, CEO of The NephCure Foundation. “Andrea is a very special person as every day she gives her time to make life better for others. The volunteers from CIBC, friends and family all contributed to the event’s success.” Andrea’s daughter, Sophia, has been hospitalized more than 40 times because of complications related to FSGS. “I have a sick child and there are others battling kidney disease as well. All they want is to lead a normal life,” said Galbraith. “It’s important for people to know about FSGS and Nephrotic Syndrome. I have an older daughter that is often feels left out because of the health needs of her younger daughter. These conditions impact the lives of patients and their families.” NephCure supports research conducted by investigators associated with Canadian institutions through a grant award co-sponsored with Kidney Foundation of Canada. In 2011, the first recipient of the $100,000 award was Dr. York Pei at University of Toronto. NephCure has committed to support up to two studies at Canadian institutions in 2014. The NephCure Foundation is the only organization solely committed to seeking the cause and cure for the kidney disease FSGS and Nephrotic Syndrome. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NephCure aims to help science unlock the biological mechanisms that cause these serious conditions and ultimately find a way to cure and prevent them. Money raised for NephCure in Canada stays in Canada and funds research and education programs applicable to FSGS and Nephrotic Syndrome.