Countdown to a Cure: Chicago February 15, 2016 by wpengine The final countdown has begin to the NephCure Kidney International Chicago fundraiser. This inaugural event will be held on Friday, February 26, 2016 from 7:30 PM to 11:30 PM at Architectural Artifacts, Inc., 4325 N. Ravenswood Ave, Chicago, IL. Chicago natives Alap Patel and Amanda Schackart are co-chairing this event. “When Amanda first started having health issues, it felt like the world around us was crumbling. We didn’t know what was happening, and we didn’t know what to expect. Not knowing was the worst,” says Al. “When she was actually diagnosed with FSGS, our instant reaction was to learn as much as we can about the disease. The problem, we soon realized, is that so little is actually known about it. We soon learned about NephCure, and started attending their events and seminars. We found them incredibly invaluable, but it wasn’t enough. “This is why Amanda and I are co-chairing this committee for the inaugural Crusade for a Cure Gala, here in Chicago. More research needs to be done on FSGS and Nephrotic Syndrome. More people need to be aware of these issues, and the impact it has on millions of families across the US. We want to build a community in Chicago where families affected by these issues 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. 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 are thrilled to finally bring this fundraiser to Chicago,” said Jayne Drew, Director for NephCure Kidney International. “The gala is in its 12th year in New York City and we believe we can have just as great of an impact here in Chicago.” TICKETS STILL AVAILABLE. Please join our crusade. Buy tickets or donate to the event online at support.nephcure.org/cdtac-chicago-2015. BIDDING NOW OPEN: Everyone can bid on the Silent auction items by texting CRUSADE to 52182 – shipping within the continental US.
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
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