Annual

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

Darlene & David Rodriguez raise $20,000 at their 2nd Annual Cristian Rivera Foundation Cocktail Party Sat 6/18/16 Catered by Cristian Rivera Foundation Committee Member
Celebrity Chef Alex Garcia

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Darlene and David Rodriguez’ 2nd Annual CRF Cocktail Party Sat, 6/18/16 To view photos from the
2nd Annual
Cristian Rivera Foundation
Cocktail Party Follow Here
Darlene & David Rodriguez
raise $20,000 at their

2nd Annual Cristian Rivera Foundation
Cocktail Party
Sat 6/18/16
Catered by Cristian Rivera Foundation Committee Member
Celebrity Chef Alex Garcia

As always If it’s a Darlene & David Rodriguez’ event,
It is an evening Filled with Great Food, Music and Good Vibes

 

To view photos from the
2nd Annual
Cristian Rivera Foundation
Cocktail Party Follow Here

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)?
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 Ketting 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!

PLEASE DONATE

Sincerely
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 Keyes, 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

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.

The Cristian Rivera Foundation attends the Second Annual Children’s Brain Tumor Project Family Council Meeting on Tuesday April 28th, 2015

second-annual-childrens-brain-tumor-project-family-council-meeting

 

The Cristian Rivera Foundation who is one of the top donors of The Children’s Brain Tumor Project is proud to attend the Children’s Brain Tumor Project Second Annual Family Council Meeting Today Tuesday April 28th, 2015. It’s an honor to come together with other families and foundations who all share the same passion towards helping fund Dr. Mark Souweidane and all the other Doctors who work tirelessly towards finding a cure for inoperable brain tumors.

John “Gungie” Rivera Gives Dr. Mark Souweidane Gifts and Donation from the Fifth Annual
Cristian Rivera Foundation Celebrity Gala

 

Cristian Rivera Foundation founder John “Gungie” Rivera recently paid a visit to personally give Dr. Mark Souweidane a check for the $100,000 pledged to his research at the Fifth Annual Cristian Rivera Foundation Celebrity Gala. The Cristian Rivera Foundation has been one of Dr. Souweidane’s main supporters and donations from the foundation have been instrumental in getting his groundbreaking clinical trial off the ground. Dr. Souweidane was happy to accept not only the donation check but also two surprise gifts from the Fifth Annual Cristian Rivera Foundation Celebrity Gala—an Andy Pettite-autographed baseball, for which John “Gungie” Rivera outbid him by $50, and a painting of Cristian, painted live at the Gala by Japanese artist Pisu, for which Cristian Rivera Foundation Committee Member Andy Epstein outbid him by $100. Pisu has done live paintings at the Gala every year since the Third Annual Gala. The Cristian Rivera Foundation is proud to give Dr. Souweidane all of these things to show our support as he continues his work toward a cure for DIPG.

NBC´s Darlene Rodriguez speaks with
The Cristian Rivera Foundation´s Founder
John “Gungie” Rivera and Dr. Mark Souweidane About Diffuse Intrinsic Pontine Glioma (DIPG)

 

Cristian Rivera Foundation Committee Member Darlene Rodriguez sat down with Cristian Rivera Foundation founder John “Gungie” Rivera and Dr. Mark Souweidane of Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College to learn more about DIPG and the Cristian Rivera Foundation’s amazing efforts to fund research into its cure. The segment aired on Monday September 30, the same day that Rodriguez hosted the Fifth Annual Cristian Rivera Foundation Gala. To see the full segment, visit http://www.nbcnewyork.com/video/#!/on-air/as-seen-on/The-Cristian-Rivera-Foundation/225787111.

Race funds cancer research

The Fifth Annual Race For Grace will be held March 31 at Norwin High School. The race, which includes a five-kilometer run, five-kilometer walk and a one-mile walk, will benefit the Reflections Of Grace Foundation.

The race and the foundation it benefits are named for Grace Elizabeth Ekis, a 5-year-old who died on Valentine’s Day 2008 after a 13-month battle with a rare brain tumor, according to the foundation’s website, run by Brian and Tamara Ekis, Grace’s parents.

The foundation provides financial, educational and emotional support to the families of children with brain cancer.

Grace’s cancer was a diffuse intrinsic pontine glioma, or a tumor of the brainstem that has no known cure and for which no advances in treatment options have been made for more than 30 years, according to the website.

The website describes it as one of the worst forms of childhood brain cancer. Approximately 150 to 200 children are diagnosed with this type of tumor each year, and survival time is typically nine to 12 months.

In 2011, the race had 1,800 registered runners and walkers, 300 volunteers and 300 spectators, and raised more than $88,000 for the families of children with brain cancer.

That was an increase in funds raised from 2010, when 2,000 attended and more than $70,000 was raised for the families of children with brain cancer.

Opening activities for the 2012 race will begin at 7 a.m. March 31, and the race itself will start at 9 a.m. at the high school at 251 McMahon Drive, North Huntingdon.

Registration fees will be $25 for adults and $20 for children age 12 and younger. A waiver must be signed for each participant, regardless of age.

The Reflections Of Grace Foundation is a nonprofit organization; www.reflectionsofgrace.org.

www.post-gazette.com/pg/12068/1215118-56.stm?cmpid=neighborhoods.xml

By Anne Cloonan

The Cristian Rivera Foundation Hosts Successful
First Annual Paintball Tournament

The Cristian Rivera Foundation gathered supporters, Committee Members and paintball lovers alike for the foundation’s First Annual Paintball Tournament. Teams competed from 8am to 12 noon at NYC Paintball in Long Island City on Saturday December 3. It was a morning filled with high-energy but good-spirited competition. The main goal was not to win—though victory was certainly sweet for winners Team AVS. The true goal of the day was to raise money toward finding a cure for DIPG, a rare, inoperable brain stem tumor that takes the lives of 200 children in the United States each year. All of the proceeds from the First Annual Cristian Rivera Foundation Paintball Tournament went toward that goal. If you missed this amazing event, visit www.cristianriverafoundation.org where new events are being announced all the time. You can also use that link to make a donation and help find a cure for DIPG.

New Cristian Rivera Foundation Bracelet Gets Celebrity Support

 

Notable names from television, restaurants, radio and sports have been seen wearing the new Cristian Rivera Foundation bracelet, which debuted at the Third Annual Cristian Rivera Foundation Gala on Monday September 12. Inspired and designed by Cristian’s Mommy Jenelle Asencio, each brown beaded bracelet features the Cristian Rivera Foundation logo in your choice of a bronze or silver charm. The bracelet received a great reception upon its debut and has already seen on the wrist of New York Yankee greats CC Sabathia and Alex Rodriguez, as well as Hot 97’s Angie Martinez, Danielle Staub of The Real Housewives of New Jersey and celebrity chefs Ricardo Cardona and Alex Garcia, both of whom are committee members of the Cristian Rivera Foundation.
Visit http://cristianriverafoundation.org/shop.html to order yours today.