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1039738_10100501785260311_721709976_oHi, 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!

We’ve said “hello” and “goodbye” to another Countdown to a Cure…

Bravo Events - 2015From 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.

Red Carpet, Nephcure-6

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.

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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.

BRAVO EVENTS -- "NEphcure Event" -- Pictured: (l-r) -- (Photo by: Heidi Gutman/Bravo)

NephCure Kidney International to Host First-Ever Fundraising Gala in Chicago

vertical banner corrected2Chicago, 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).

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Media Contact: Jayne Drew
jdrew@nephcure.org
267-261-4918