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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.

 

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

Cristian Rivera Foundation’s annual gala to cure rare childhood cancer is set for Nov. 17

dailynews

Follow here to read
The New York Daily News article
published Today Sat 11/14
which highlights The Cristian Rivera Foundation’s
drive and dedication to find a cure for DIPG
and the upcoming Gala Tues Nov 17th
at the Broad Street Ballroom.

BronxNet will honor TODAY Show contributor, Bronx native & Cristian Rivera Foundation Committee Member – Darlene Rodriguez at its 20th anniversary service and achievement awards luncheon

darlene30b-1-web

 

She’s an award-winning journalist who contributes to a morning show viewed by millions.

But “TODAY Show” journalist Darlene Rodriguez is a Bronx gal at heart — who got her start 20 years ago as a cub reporter covering stories uptown for BronxNet, the local public access channel.

The Soundview-born, Morris Park-raised newsreader will join Borough President Ruben Diaz, Jr. and Lehman College President Dr. Ricardo Fernandez as honorees Thursday at the public access channel’s 20-year anniversary.

“They gave me a great opportunity,” Rodriguez told the Daily News Tuesday. “They have hard working, passionate people who are trying to produce good television. I felt that passion from the beginning, and I admired them.”

Rodriguez, a married mom of three now based in Westchester, said she recalled reporting on the closing of iconic department store Alexander’s on Fordham Road — and freezing up and spouting jibberish amid a scrum of reporters with then Bronx Borough President Fernando Ferrer.

“I was terrified,” said Rodriquez, an anchor of Today New York, the local NBC morning show and a contributor to the nationally broadcasted TODAY Show. “And Fernando Ferrer, being as kind as he was, he turned to me and gave me an answer.”

Housed on the Lehman College campus, BronxNet has morphed into a six channel media entity that offers production training in addition to local news, politics and arts programming.

“It’s tremendously exciting to serve the people of the Bronx as we grow,” said Michael Max Knobbe, BronxNet’s executive director. “Darlene is a shining example of how the workforce opportunities that BronxNet provides can result in someone being a media leader and role model.”

Follow Here to Read the Daily News Article Featured Wednesday, April 30th, 2014