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