8th

Daily News EXCLUSIVE: Father continues crusade to find cure for rare cancer that killed his son years ago with city fund-raiser

John "Gungie" Rivera's son Cristian died from a rare brain cancer, and the dad turned the tragedy into a crusade for a cure for the fatal disease.
John “Gungie” Rivera’s son Cristian died from a rare brain cancer, and the dad turned the tragedy into a crusade for a cure for the fatal disease.

Nearly a decade ago, John Rivera turned the worst crisis a parent can face — the terminal cancer diagnosis of his young son — into a lifelong quest to help save other children’s lives.

In 2007, Rivera’s 4-year-old son, Cristian, was diagnosed with a very rare form of brain cancer, diffuse intrinsic pontine glioma, or DIPG.

An extremely rare but devastating disease, DIPG affects less than 300 kids each year but has an extremely high mortality rate — less than 1% live five years after being diagnosed.

Cristian died in 2009 at 6, but his brave, two-year battle with the disease spurred Rivera to dedicate his own life to raising money and awareness to fight DIPG.

 

“It’s still very difficult,” Rivera said about losing his son. “But I have to be one of the people — one of the tools — that helps find a cure.”

Rivera, 52, a music producer and promoter known in the industry as “Gungie,” in 2009 created the Cristian Rivera Foundation, a nonprofit that donates all monies raised to hospitals and foundations researching cures for DIPG.

On Wednesday, the foundation will host its eighth annual celebrity fund-raising gala at the Broad Street Ballroom in Manhattan.

The event, hosted by NBC’s Darlene Rodriguez, will honor Dr. Mark Souweidane, director of the Weill Cornell Pediatric Brain and Spine Center and the physician behind a new treatment trial partly funded by the foundation and its supporters.

 

Cristian died almost a decade ago, and has since created the Cristian Rovera Foundation that donates all monies raise to research for a cure.
Cristian died almost a decade ago, and has since created the Cristian Rovera Foundation that donates all monies raise to research for a cure.

“When my son was diagnosed, there was no hope for a cure and very little information,” Rivera said. “Now almost 10 years later, there has been so much progress.”

DIPG tumors are found in the brainstem, making the cancer incredibly difficult to treat with chemotherapy. Dr. Soudweidane’s new trial uses a technique known as convection-enhanced delivery, or CED.

This method treats the tumor by inserting hairline fibers laced with a chemo agent through the difficult-to-penetrate blood-brain barrier and directly into the tumor on the brainstem.

There are still no confirmed survivors of the disease, but Rivera is hopeful that this new trial is a major step towards a cure.

“We’ve been able to treat approximately 31 children,” Rivera said. “Unfortunately, most of them have passed. But there is one little girl that has tolerated the treatment very well. She’s 11, the oldest child I know with the disease.

“It’s wonderful to see the foundation grow every year,” Rivera adds. “Even if I can’t get everyone to donate, I know that I’ve planted a seed of information and spread awareness about a disease that so few people know about.”

 

To Ready More, visit
nydailynews.com/new-york/manhattan/dad-raises-money-cure-cancer-killed-son-years-article-1.2888392

Local Charity Aims To Cure Deadly Pediatric Cancer With Star Power


 

We love great non-for-profit work, for the eighth year in a row, New York City-based not-for-profit 501(c)(3) The Cristian Rivera Foundation is gathering celebrities, supporters and donors to raise money toward a groundbreaking clinical trial aimed at curing Diffuse Intrinsic Pontine Glioma (DIPG).

The eighth annual Cristian Rivera Foundation Celebrity Gala will be held at Broad Street Ballroom in Manhattan on Wednesday, November 30. The foundation namesake Cristian Rivera was only 4 years old when he was diagnosed with the rare pediatric brain stem tumor, which generally affects children between the ages of 1 and 9. Approximately 200 children are diagnosed with DIPG each year in the United States and most only survive for 3 to 18 months after diagnosis.

Through auction items, ticket sales and more, the eighth annual Cristian Rivera Foundation Celebrity Gala will raise money in support of a clinical trial at Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College that officially got underway on May 1, 2012, thanks to the more than $700,000 in donations from the

Cristian Rivera Foundation to date. Spearheaded by Dr. Mark Souweidane, the Director of the Weill Cornell Pediatric Brain and Spine Center, this trial is the first of its kind to use convection-enhanced delivery to administer radio immunotherapy to children with an otherwise incurable tumor.Dr. Souweidane has found a way to operate on a tumor that had, until now, been deemed inoperable. Dr. Souweidane has developed a safe method for drug delivery to these tumors by a highly innovative surgical procedure. Up until this time surgery has played no role in the treatment plan for these children with DIPG. This procedure involves implanting a small hair-like device into the center of the tumor and then using a slow constant flow of drug directly into the involved brain stem. The Cristian Rivera Foundation is proud to support Dr. Souweidane’s important research.

The eighth annual Cristian Rivera Foundation Celebrity Gala will be hosted by Cristian Rivera Foundation Board of Director and Anchor of the award winning NBC’s “Today in New York”, Darlene Rodriguez. The event kicks off at 6pm with red carpet arrivals from esteemed guests and foundation committee members. Tickets are sold out and include passed hors d’oeuvres, five hours of open bar, and dinner provided by Celebrity Chefs Alex Garcia, a committee member of the Cristian Rivera Foundation. There will also be live and silent auctions offering one-of-a-kind items and experiences.

The eighth annual Cristian Rivera Foundation Celebrity Gala will begin at 6 PM and end at 11 PM on Wednesday, November 30th. The Broad Street Ballroom is located at 41 Broad Street in the Financial District. Sponsorship packages and ads to be displayed in the program are still available for purchase. The Cristian Rivera Foundation is accepting donations in the fight against DIPG. All contributions are tax-deductible and critical to finding a cure for this disease and assisting children and families in their ongoing fight against DIPG.

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Remembering Delaney Starcher

 

Happy 8th birthday to DIPG angel, Delaney Starcher born April 1st, 2004. “Laney Bug” was diagnosed on October 9th, 2008 at just over 4 years old and about a year later on December 1st, 2009 this little angel earned her wings. She won her battle and found her place in heaven, where she watches over her mom and step-dad, sisters and brother. Delaney was the uplifting spirit to all around her and we’re sure that will never change. Happy birthday, angel.