Tuesday, November 13, 2018
Cristian Rivera Foundation that battles deadly childhood cancer DIPG marks 10th annual event with a success story

Kenan Thompson (l.) and Leisha Ayalais. (Courtesy Cristian Rivera Fund)
Kenan Thompson (l.) and Leisha Ayalais. (Courtesy Cristian Rivera Fund)

The Cristian Rivera Foundation will have a reason to celebrate when it holds its 10th annual fundraising gala to fight a rare childhood cancer on Wednesday, Nov. 14.

The foundation has been on a mission over the past decade to find a cure for diffuse intrinsic pontine glioma, or DIPG, a rare form of deadly brain cancer mainly affecting small children. Each year, roughly 200 children are diagnosed with DIPG, and nearly all usually succumb to the aggressive cancer within 18 months.

But the celebrity-studded gala, at Manhattan venue Capitale, will commemorate a rare success story: 13-year-old Lisha Ayalais, who was diagnosed with DIPG six years ago, has defied the odds and continues to show no growth in her tumor.

”Lisha is doing phenomenal. We are going on 6 years and she is still DIPG-free,” said CRF founder John (Gungie) Rivera. “This is evidence that the work that we are doing — the trials that our doctors are working on — are effective.”

Rivera, a local music producer and promoter, started the foundation in honor of his son Cristian, who passed away from the disease at only 4 years old and is the driving force behind the event.

Though Cristian did not win his battle with DIPG, Rivera continues it on his son’s behalf, raising funds annually to help underwrite clinical trials aimed at treating and hopefully one day curing the condition.

Lisha is currently in one of those trials at Weill-Cornell Brain and Spine Center in Manhattan, working with Dr. Mark Souweidane, a pediatric neurosurgeon specializing in DIPG.

Cristian Rivera and John (Gungie) Rivera) (Handout)
Cristian Rivera and John (Gungie) Rivera) (Handout)

This year’s event, hosted by foundation co-chair Darlene Rodriguez of NBC News, will feature such celebrity guests as Kenan Thompson of “Saturday Night Live.”

Honorees include actor Ramon Rodriguez, who will receive a humanitarian award for his recent work in Puerto Rico with the 100Roofs Project that aims to help those on the island still struggling after last year’s devastating storms by providing carpenters and training locals to become professional roofers.

It was inspiring to see his commitment to Puerto Rico,” Rivera said. “It reminds me that I am not alone in my efforts to make a difference, even when facing major challenges.”

For more info on the Cristian Rivera Foundation, buy tickets to the gala or donate to the fight against DIPG, go to


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Congratulations Dr. Souweidane

Dr. Mark Souweidane

Congratulations to Dr. Mark Souweidane, whose highly anticipated results of the first-ever dose escalation study using convection-enhanced delivery (CED) in patients with DIPG, were published in Lancet Oncology. Thank you Dr. Souweidane, for continuously working hard towards finding a cure for DIPG. “Full Steam Ahead”

Follow Here to Read the CED Letter

Cristian Rivera Foundation Boat Ride around NYC on July 15 is child cancer fundraiser

Cristian Rivera

One of New York City’s best-known music promoters of the ‘90s is having a throwback dance party — that doubles as a fundraiser for a cause near and dear to his heart.

Revelers who hop aboard the Circle Line on Saturday, July 15, at 7 p.m. for the second annual Cristian Rivera Foundation Freestyle Flashback Benefit Boatride will be treated to several hours of freestyle dance music courtesy of a live performance by singer Noel, along with DJ Tedsmooth, Big Paul and Rob Lo, with Alizay and Speedy of the Luis Jimenez Show serving as hosts.

But the real purpose of the evening is to raise money for the Cristian Rivera Foundation, a nonprofit that donates all monies raised to hospitals and foundations researching cures for DIPG, a deadly childhood cancer.

The foundation is named for Rivera’s son Cristian, who was diagnosed with DIPG in 2007 and died two years later at age 6. DIPG — diffuse intrinsic pontine glioma — is a rare form of brain cancer that affects less than 300 kids each year but has an extremely high mortality rate. Less than 1% of those diagnosed with the disease live five years after being diagnosed.

“Creating awareness and fundraising is very difficult,” says Rivera, who founded the Cristian Rivera Foundation in 2009 and has dedicated his life to the cause in memory of his son.

The concept of a fun-filled boat ride around Manhattan with live music was “a way to get 600 people to come to an event because of the entertainment,” Rivera adds.

“Once they are at the event I am able to educate them about DIPG while raising funds. By the end of the event a fair percentage of our attendees become supporters of the foundation, so it’s a win-win. Most of the attendees are people who used to attend my events or follow me when I was a DJ.”

Rivera, who every fall also throws a massive fundraiser for the foundation in Manhattan that features celebrity guests from the entertainment and sports worlds, plans to use his connections and experience as a promoter to expand his fundraising efforts beyond the annual boat ride.

“In the spring of 2018 we are going do the first annual walk,” Rivera says. “We also have three concerts in the works as well as various small cocktail receptions that are being produced by our board of directors, committee members, committee friends and our supporters.”

John (Gungie) Rivera (right) with Cristian. (COURTESY OF JOHN RIVERA)

Rivera says the foundation’s efforts to raise money for research are beginning to pay off. “One of the patients in our trials, an 11-year old girl from Connecticut named Lisha Ayala, has had DIPG for almost five years. In the past four years there has been no activity in her tumor,” he says.

“I may be speaking prematurely, but my feeling is that she will be our first survivor. To my knowledge, there has been no one with DIPG that has lived this long.”

The Cristian Rivera Foundation Freestyle Flashback Benefit Boatride on Saturday, July 15, starts at 7 p.m. sharp on the Circle Line at Pier 83, W.42nd St. and Westside Highway. The event is from 8 p.m. to 12 a.m.

To purchase tickets or for more information, go to


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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.


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.”


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Minnesota Boy with D.I.P.G. meets his favorite Power Ranger in California thanks to Little Kernel Popcorn Company & Cristian Rivera Foundation

The Cristain Rivera Foundation & The Little Kernel Popcorn Company
The Cristain Rivera Foundation & The Little Kernel Popcorn Company

Minnesota Boy with D.I.P.G. meets his favorite
Power Ranger in California thanks to Little Kernel Popcorn Company & Cristian Rivera Foundation

At The Cristian Rivera Foundation, our primary goal is to assist in finding a cure for Diffuse Intrinsic Pontine Glioma. Our Foundation also plays a critical role in supporting families that are impacted by D.I.P.G. By pulling together all of our resources to make dreams come true.

Such is the case when the founder of the Cristian Rivera Foundation,
John Gungie Rivera, learned about Allen Xiong’s wish to meet the blue Power Ranger.

Allen is an 8 year old boy who was diagnosed with D.I.P.G. Just like most children his age, he loves The Power Rangers and his dream was to meet his favorite Power Ranger- the Blue Power Ranger. John contacted the CEO of The Little Kernel Popcorn Company, Andy Epstein. He also contacted Craig Serra who also serves as a board of directors for The Cristian Rivera Foundation & “JOINED FORCES” with Robert Vazquez, a Cristian Rivera committee member, and Like the Power Rangers, they all “JUMPED INTO ACTION” and started the process of making Allen’s wish come true.

This past weekend The Cristian Rivera Foundation and
The Little Kernel company fulfilled Allen’s wish when he came
with “Yoshi“, the talented actor who plays the
Blue Power Ranger at the Pasadena Morphicon Power Ranger Convention.

After Allen met his favorite Blue Power Ranger here is what his family said- “Thank you CRF… Allen was sooo happy today when he met with Yoshi the Blue Dino Power Ranger… It made him speechless… He didn´t know how to speak anymore lol he was so shy and nervous that he forgot how to talk or move lol… We saw him yesterday at the Q & A but didn´t meet him yet… I didn´t know who Yoshi is until Allen point him out and say mom he´s the blue Dino power ranger.. I asked him how he know? He´s not him his costume? Allen response was that you got to be a big fan to know lol… This boy is too smart for me… Thank you from the bottom of our heart for making this dream come true.. Love Allen and family ♥♥♥”

We at The Cristain Rivera Foundation & The Little Kernel Popcorn Company are “Full Steam Ahead” in finding a cure and fulfilling dreams! Spread the word, support & help us get closer to a cure.

Learn more at

Our Mission
The mission of the Cristian Rivera Foundation is to help find the cure for the Pontine Glioma brain stem tumor.

What is DIPG (Diffuse Intrinsic Pontine Glioma)?
Diffuse Intrinsic Pontine Glioma or DIPG, is a Rare, Inoperable Brain Stem Tumor that predominantly affects children between the ages of 2 and 10. Only 200-300 cases are discovered in the United States each year and because there is no cure, it’s young victims only have an average of 3-18 months to live, after they’ve been diagnosed. There are NO SURVIVORS.

Who is The Cristian Rivera Foundation?
The Cristian Rivera Foundation is a 501 (c)(3) Non-Profit Organization that works tirelessly, in order to raise awareness and funds to one day put a STOP to this disease. The Cristian Rivera Foundation funds the work of Dr. Mark Souweidane of Weill Cornell Medical Center – Memorial Sloane (Kettering) Cancer Center and Dr. Oren Becher of Duke University. Both Doctors are conducting promising research and trails that have shown promising results. We are CLOSE to a CURE!

How Can You Help:

  • Help us by making a Donation.
  • Every Donation Big or Small, will help us achieve our goal.
  • Help spread the word to your family, friends and Colleagues.

Thank You again and may this be the year we say goodbye to DIPG, (Diffuse Intrinsic Pontine Glioma), FOREVER!


The Cristian Rivera Foundation

John “Gungie” Rivera
(Founder of The Cristian Rivera Foundation & “Forever Cristian’s Daddy”)

Board of Directors of the Cristian Rivera Foundation:
Andy Epstein, Darlene Rodriguez and Craig Serra.

Committee Members of the Cristian Rivera Foundation:
Aldo Marin, Alex Garcia, Carlos Colon, Carlos Yepez, Dennis Rodriguez, Dolores Catania, Dr. Ben Velazquez, Dr. Manuel A. Moran, Elis Pacheco, Fernando Ferrer, J.I. Starr, John “JellyBean” Benitez, Kenan Thompson, Kim Medina, Little Louie Vega, Luis Guzman, Meiling Macias Toro, Miriam Colon, Nirav Patel, Robert Vazquez, Rafael Toro, Ramon E. Javier, Steve Cox, Tony Ferrara and Vito Bruno

Committee Friends of the Cristian Rivera Foundation:
Carlos Nazario, Edward Caban, Francisco Companioni, Funkmaster Flex, Jerry Chaparro, Mark Rosner, Modesto Lacen, Odalys Molina, Pablo Diaz, Paul Pristavec, Roberto Clemente Jr., Steven Rodas, Teddy “Tedsmooth” Mendez, Victor Martinez, and William Pla

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