Donna Colucci

Gabriel Colucci was two years old when he was diagnosed with Minimal Change Nephrotic Syndrome. Although Gabriel has been in a med-free remission after an eight-year battle for the past two years, his mother, Donna, continues to help further the NephCure mission.

Donna managed a booth at a local Oktoberfest and spread the word about the increasing incidences of Nephrotic Syndrome and FSGS. She encouraged by-passers to become NephCure members and to contribute towards a worthy cause.

Donna says “I believe that with the help of NephCure and all of us, we can better the chances of saving kidneys and restoring some normalcy to our children’s lives.”  

Michele Copeland

In October, Michele Copeland, FSGS patient from New Jersey, organized a walk to benefit The NephCure Foundation. Her efforts were illustrated by Allegra Tiver in the Health Notes section of the Gloucester Times (read here).

Before the day that the story was released, Michele thought she was the only patient affected by this condition in her area. At the day of the walk, six patient families from her area who had noticed the article in the local paper came to Chestnut Branch Park in Mantua, New Jersey to join Michele's efforts.

The walk was sponsored by the South Jersey Vascular Institute. More than 50 people walked to help save kidneys and to save lives.

Dylan, Ryan, and Brett

Three years ago, Dylan was diagnosed with Nephrotic Syndrome. Together with his brothers, he sent out a letter to his family and friends asking for their support of NephCure:

Dear Family and Friends,

Two years ago my doctors discovered that my kidneys were sick. They call it Nephrotic Syndrome. I have been taking medicine to help my kidneys and I am doing okay. However, there are other children who are not doing as well. My brothers and I want to help raise money to help the doctors find a cure for Nephrotic Syndrome.

We are going to raffle off a night in New York City with two tickets to a Broadway Play and hotel accommodations. We will donate 100% of the money raised to The NephCure Foundation. Our parents will be having a get together in January to pick the lucky winner. We will let everyone know how much money was raised for Nephcure.

Thank you,

Note: Letter writing campaigns are among the most efficient ways to fundraise. The time and cost you will spend are minimal, while the rewards are vast! NephCure thanks all participants for their support. To learn more, click here.

The Ferrone Family

For the third time, Toni Ferrone organized “Night of Comedy” in October 2006 and raised an estimated $11,000 to benefit The NephCure Foundation.

Several patient families attended including Garret Gurrieri who addressed the crowd, speaking about his personal experiences with FSGS. He then introduced his best friend who donated his kidney and saved Garret’s life.

The show’s headline comedian was Vic DiBetetto who captured the crowd’s attention.  Attendees participated in a 50/50 drawing and a raffle with beautifully arranged gift baskets put together by Toni and her friends.

Toni’s son Jack was diagnosed with Mesangialproliferative Glumerolnephritis (MesPGN), a rare form of Nephrotic Syndrome at age 2. When she learned of Jack’s condition, she teamed up with NephCure. Unfortunately, Toni was unable to attend due to health constraints. However, Night of Comedy continues to be successful with the support of her family, friends, co-workers and other patient families.

Illinois Patient Family Power

In October, Illinois patient families joint forces to spread the word about Nephrotic Syndrome and FSGS.

As the mother of a child affected by FSGS, Sue Rogers, rallied other patient families in her area to take a step forward. With the assistance of Veronica Archila, Julie Bacarella, Cindy Dobbins, Chris Veech, and the Flesch Family more than 100 people joined the inaugural “Illinois Takes a Step Forward” walk to benefit the NephCure Foundation.

Sponsors included Burrell Professional Labs, Moody’s Pub, and Sam’s Club. Together, they raised close to $19,000! Walkers who raised over $100 were entered into a raffle to win prizes donated by Sharp, Best Buy, Meijer, GioLarno’s, and Anderson Book Shop.

In the same month, these families organized the first 'Chicago-land' Patient Family Education Seminar at Children’s Memorial Hospital. Over 40 patient families received information on Nephrotic Syndrome and FSGS and interacted with the presenters which included:

H. William Schnaper, M.D.
Professor of Pediatrics
Northwestern University of Medical School

Eunice John, M.D., F.A.A.P.
Chief of Pediatric Nephrology
Children's Kidney Center of Illinois
University of Illinois  

Raju Behara, M.D. - Fellow
Internal Medicine
Rush University Medical Center

Sergio V. Grajeda, Ph.D.
Kidney Disease Social Worker
Division of Kidney Disease
Children’s Memorial Hospital

Martha Escamilla
Social Worker
Davita Dialysis Center

Lellow Chakras

Lauren Balson and her friend Whitney Wineroth are the creators of "Lellow Chakras, a trendy new fashion label which originated in San Francisco, CA. In November, the two friends launched their first fashion line under this label. To introduce the line to the public, the friends staged “Fashion on the Front Line”, a gala event to benefit the NephCure Foundation.

Lauren has FSGS in is a dedicated to help solve the mystery to find a cure for this condition.

Molly Modes

Molly Modes parents, grandparents, sibling, cousins, aunts and uncles joined the NephCure mission and have been committed supporters of various NephCure initiatives including “Letters for Life” and “Change for a Cure”. Molly Modes has FSGS and is currently enrolled into a NIH study (more on FSGS trials, click here).

In December, NephCure received the following note:

Dear NephCure Foundation,

My name is Grace. I go to St. Michael School in Livonia, Michigan. My school wears uniforms, and sometimes hosts dress down days to raise money for charitable causes and various foundations. After talking to my principle, I got a date set to hold a dress down day to fund research and help find a cause and a cure for Nephrotic Syndrome and FSGS. I asked each student for 25 cents in order to wear jeans to school. Or school is very generous, so they raised a total of $623.24 for this worthwhile cause

I decided to host this dress down day in honor of my sister, Molly, who was diagnosed with FSGS last February. If this money could be matched, that would be appreciated.

Sincerely, Grace

The Miller Family

Lynne Miller and her children, Katie and Laurie, have been outstanding supporters of The NephCure Foundation for several years. In September 2006, they organized “Ohio – Takes a Step Forward” a walk to benefit NephCure in Akron, Ohio.

The nephrology community including the three sponsors DSI, Inc., Northeast Ohio Nephrology Association, and Akron Nephrology Associates, Inc. demonstrated great support.

The walk brought together patient families from the area who met at the walk for the first time. It was a great opportunity for them to exchange their experiences with Nephrotic Syndrome and FSGS and to step forward in unity to help find a cure for these conditions.

Oregon Patient Family Power

Even a typical northwestern, rainy Sunday afternoon in October ‘06, did not deter two Oregon mothers, Jamie Merdler and Nikkole Palmer, from walking! They have come together to battle the increasing incidences of Nephrotic Syndrome and FSGS, conditions which have been affecting their sons, Blake and Alec.

With the support of 50 supporters, the walk brought together patient families, friends and healthcare professionals to raise awareness and important funds to support NephCure’s mission.

On behalf of NephCure, we thank Jamie and Nikkole for their efforts organizing their first walk despite the rainy forecast. We are looking forward to working with them in 2007!

To learn how you can organize a walk in your community, contact Miriam Long at mlong@nephcure.org or call 1 (866) NephCure.

The Orton Family

Motorcyclists continue to help make a difference...As the father of a son affected by Nephrotic Syndrome, Brian was committed to find a cure. As the co-founder of the NephCure Foundation, he continues to help further the organization's mission. With his 2-Fast.org business partner Mark DeGross, Brian Orton raised an estimated $55,000 at the 4th annual Seattle 100. This motorcycle endurance raise took place on Saturday, July 29, 2006 at Pacific Raceway’s road course in Auburn, WA.

Christian Orton was diagnosed with Nephrotic Syndrome at the age of only 10 months. This condition occurs when kidney filters malfunction and protein needed by the body is instead lost though urine. Swelling occurs throughout the body, especially around the eyes and limbs, cholesterol soars, and hospitalization is generally required. Long-term effects of Nephrotic Syndrome can cause Focal Segmental Glomerulosclerosis (FSGS), kidney scarring that can require daily dialysis, or a kidney transplant. Fortunately, Christian is in remission!

The Shaak Family

With "Tie a Knot for Kelsey", the Shaak family has traveled through Pennsylvania to sell handmade wristbands. In October, they set-up their table at the 2006 Philadelphia Rodeo & Bullriding Championship.

All proceeds are donated to NephCure. Kelsey's family is also involved in the "Donate a Phone for a Cure" and the "Change for a Cure" program. If you would like to order a bracelet, please email info@nephcure.org.

The Stewart Family

Disc golf fanatics joined the Stewart family for the 4th Annual Spin to Win Disc Golf Tournament in September 2005!  The tournament was held at French Creek State Park in Birdsboro, PA followed by an after party at the Stewart home featuring great food and victory beer.

Brad Stewart is already working on the sequel in 2007. Disc Golf competitors, mark your calendars for the 4 th weekend in September!

The Stewart family has been supporting the NephCure Foundation from its very beginning. Brad Stewart is one of the 'founding-father's' of the organization and a member of its board of directors. His daughter, Melanie, was diagnosed with FSGS at age seven. To learn more about Melanie, click here.

The Turner Family

Charles Turner, President of Jet Food Stores and his wife Beth did it again! For the fourth consecutive year, the Jet Food Stores Annual Golf Tournament was held in Sandersville, GA in May 2006. Proceeds from this tournament were donated to the NephCure Foundation.

The Turner's 6-year-old daughter, Madison has FSGS. She is currently on medication in an effort to slow down the progress of this condition. "It's a blessing to even know that Madison has this condition as most cases are not diagnosed until patients are nearing kidney failure", says Charles Turner.

Participants enjoyed the food, soft drinks and snacks which were provided throughout the day.

The Klein Family

"Kelsay is a fighter", says Darla Klein about her daughter who has FSGS and who is not responding to any treatment. In June, Darla, attended NephCure’s first annual conference in Philadelphia and met other patient families. That day, she decided to volunteer for NephCure to help increase awareness and to fund research.

On October 7 th, Darla organized “Kelsay’s Walk to Save Kidneys and to Save Lives” at Moraine State Park in Moraine, PA. With the support of her and other patient families, Darla stepped forward in the fight against the increasing incidences of these conditions.

Sonia Valentine
Sonia Valentine has been a great supporter of NephCure’s “Letters for Life” campaign. A kidney transplant recipient herself, she has been sharing the story of her grandson, Noah and has raised $22,500 to date.

"My grandson Noah arrived on February 20, 2003 -- 7 pounds, 9 ounces, healthy, strong, and perfect. For the first many months, we reveled in all the moments that you would expect. We marveled as Noah found his smile, giggle, fingers, and toes. We helped with bathes in the sink and walks in the stroller.

But as Joan Didion wrote in The Year of Magical Thinking,

Life changes fast.
Life changes in the instant,
The ordinary instant.

For Noah, and for all of who love him, that ordinary instant was a morning in January 2004 when Noah woke up with puffy eyes. After a trip to the doctor's office and some tests, the doctor discovered protein in Noah's urine -- a sign that his kidneys had suddenly stopped working as they should.

By the time Noah was fourteen months, the ordinary moments we expected had been replaced by talk of nephrotic conditions an by the grief of watching our small grandson swollen and exhausted from failing kidneys and powerful medications. The doctors suspected that Noah had one of three conditions -- each slightly worse than the next. Based on Noah's reaction (lack of reaction) to medication and the result of a kidney biopsy, the doctors diagnosed Noah with FSGS (Focal Segmental Glomerulosclerosis), a scarring of the kidney filtering function that can lead to kidney failure..." Full Story

Note: Letter writing campaigns are among the most efficient ways to fundraise. The time and cost you will spend are minimal, while the rewards are vast! NephCure thanks all participants for their support. To learn more, click here.