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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 November 2016 Newsletter

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Cristian Rivera Foundation 2016
November Newsletter

November is always an exciting month for The Cristian Rivera Foundation. First, there is Thanksgiving and who doesn’t love Thanksgiving? We love being able to take the time out of our busy schedules and spend time with our family and friends to reflect on the past year and express gratitude. However, it is around our dining room tables, surrounded by those who love us, we take a moment to remember the unfortunate reality that many families are incomplete at the dinner table. Many families are missing their daughters and sons, they are missing their brothers and sisters. All because of this terrible reality of Diffuse Intrinsic Pontine Giloma (DIPG). The Cristian Rivera Foundation exists to fight so that no more families are incomplete on Thanksgiving-or any other day of the year.

The Cristian Rivera Foundation is also very excited about our 8th Annual Celebrity Fundraising Gala, which is on November 30th! We are thrilled with the Gala this year. We have been working hard to make this the best event to date.  We’re honoring Brandon Stanton of Humans of New York as our 2016 Humanitarian Award winner because of his work on increasing awareness about DIPG. We are so proud to also honor Dr. Mark Souweidane of Weill Cornell Medicine with the Vision of Hope Award for his seemingly endless dedication and hope to finding a cure for DIPG. We are proud to honor Board of Director, Craig Serra with the 2016 Service & Dedication Award for his commitment to the Crisitan Rivera Foundation. We are honored to bestow the 2016 Golden Wings onto Juliana Donnelly; her parents Brian and Doris will be addressing us at the Gala. As you probably already know, the 8th Celebrity Fundraising Gala is SOLD OUT! This is the third year in a row that the Celebrity Fundraising Gala has been sold out and this year- one month before the Gala!  We still have more exciting news to come about this year’s Gala, so stay tuned as we up to date!

Our Platinum Sponsors Our Gold Sponsor Our Silver Sponsors Our Bronze Sponsors

We look forward to seeing you at the 8th Annual Celebrity Fundraising Gala! If you did not get a ticket in time, there are still ways to be involved with the Gala. You can purchase a sponsorship or an ad to be featured in our program. You can make a donation. You can volunteer the night of the Gala. All monetary contributions are tax-deductible. All support is appreciated. We are excited to see our Board of Directors, Committee Members, and Committee Friends at the Gala! We are thrilled to welcome new- and returning- guests to the Annual Cristian Rivera Foundation’s Celebrity Fundraising Gala! See you on November 30th!

We’re proud to feature Committee Member,
Carlos Yepez

Carlos is the November featured Committee Member. Carlos is the Business Relationship Manager and Vice President of PNC Bank in West Windsor, New Jersey and President of the PNC Bank Latino Employee Resource Group in the Central NJ Market. He has two children and is married to Brenda. He has been part of the Cristian Rivera Foundation since 2015. We are glad to have him on our side!

We interviewed Carlos recently and asked him some questions about his involvement with the Cristian Rivera Foundation. Interview below:

1. What does it mean to you to be a part of the Cristian Rivera Foundation? I love being part of a great organization. I love being a soldier in the fight against DIPG. This is an important fight and I’m proud to be a part of this organization to find a cure.

2. What is your favorite part of the Annual Cristian Rivera Foundation’s Celebrity Fundraising Gala?

The part that is my favorite is also really the saddest part of the night, but it is my favorite because it is the most impactful. When the video featuring Cristian and all the other children who suffered from DIPG is played the entire room gets quiet, emotional, and contemplative. The other guests and me sit there and think about what we just watched. It inspires me to work harder and to do everything I can to help find a cure.

3. What do you enjoy the most about the Cristian Rivera Foundation?

I really like that the Cristian Rivera Foundation Board of Directors, Committee Members, and Committee Friends are all volunteers. All the proceeds we raise go to research, which means your donation goes to finding a cure. The people receiving your donations are real people. Dr. Mark Souweidane is a very sincere guy. We have the right people involved in this organization. It is about getting people to understand the cause and to donate. We’ve made huge strides in such a short amount of time-imagine what we can accomplish in the long run!

Happy Birthday To Our Committee Member

Manuel Morán
November 29

Remembering DIPG Angel Birthdays
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Remembering DIPG Angel Anniversaries
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Sincerely
The Cristian Rivera FoundationJohn “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,
Dr. Manuel A. Moran, Elis Pacheco, Fernando Ferrer, Kenan Thompson, Louie Vega,
Luis Guzman, Meiling Macias Toro, Miriam Colon, Nirav Patel, Robert Vazquez,
Rafael Toro, Ramon E. Javier, Steve Cox, Teddy “DJ Tedsmooth” Mendez,
Tony Ferrara and Vito Bruno

Committee Friends of the Cristian Rivera Foundation:
Ben Velazquez, Dean Feratovic, Edward Caban, Jerry Chaparro,
Mark Rosner, Modesto Lacen, Pablo Diaz, Paul Pristavec, Robert Dominguez,
Steven Rodas, Victor Martinez, and William Pla

Support the Cristian Rivera Foundation
by Purchasing a Cristian Rivera Foundation
Wristband or T–Shirt.

Follow Here to Purchase Your Own CRF Wristband or T–Shirt

Make a Tax Deductible Donation to
The Cristian Rivera Foundation
>>Follow Here<<

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Breaking CRF News: Brandon Stanton, of Humans of New York, to receive 2016 Humanitarian Award at the 8th Annual Cristian Rivera Foundation’s Celebrity Fundraising Gala

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The Cristian Rivera Foundation has amazing news to share! This years’ Cristian Rivera Foundation’s Humanitarian Award recipient is Brandon Stanton. Brandon is the founder of the incredibly popular Humans of New York! Earlier this year, Brandon ran a story and a subsequent fundraising campaign to benefit Dr. Mark Souweidane. We were impressed with Brandon’s dedication to humanity. We are honored that Brandon accepted the award and we look forward to hearing him speak at the Gala.

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.

Follow here to read more

 

 

The Cristian Rivera Foundation October 2016 Newsletter

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The Cristian Rivera Foundation October 2016 Newsletter

Cristian Rivera Foundation
October 2016 Newsletter

It has been quite a while since our last newsletter, but we are back and better than ever! We hope everyone had a good October! We are looking forward to the rest of this beautiful fall and to working together in November to pull off the 8th Annual Cristian Rivera Foundation’s Celebrity Fundraising Gala. We are working hard to plan a beautiful evening dedicated to the children who suffered and are suffering from DIPG.

There are quite a few updates to give. First, Dr. Mark Souweidane treated his final patient in Phase I clinical trial of convection-enhanced delivery (CED) for DIPG. The trial, which enrolled 31 patients over the last 4 years, was to test the safety of CED as a means to fight the DIPG tumor directly. You can read more from Dr. Souweidane Weill Cornell Brain and Spine blog, here. In more good news, Lisha got her latest MRI results in and her results were excellent: stable with no growth! Lisha is the living proof that the work of the Cristian Rivera Foundation in supporting Dr. Souweidane and his team is valuable and making great strides in finding a cure for DIPG.

Many of you remember Allen. If you don’t, Allen was an 8 year old boy who was diagnosed with DIPG and had one wish-to meet his favorite Power Ranger.  The Cristian Rivera Foundation and The Little Kernel was able to send Allen and his family to California to fulfill his wish of meeting the Blue Power Ranger, his favorite one! But, it is with heavy hearts that we are reminded of the severe reality of DIPG because Allen passed away on October 9th. Our prayers and thoughts are with Allen and his family during this time.

As you know, the 8th Annual Cristian Rivera Foundation’s Celebrity Fundraising Gala is Wednesday, November 30th at the Broad Street Ballroom starting at 6 PM. Tickets are almost sold out, but sponsorships and ads to be featured in our program are still available for purchase. We are still seeking live and silent auction items. If you, or someone you know, would like to donate an item or an experience please email info@cristianriverafoundation.org so we can send you the Auction Donation Form.

To date, the Cristian Rivera Foundation has donated more than $700,000 to research of Dr. Mark Souweidane of Memorial Sloan Kettering Cancer Center and the Director of the Weill Cornell Medical College Pediatric Brain and Spine Center and families of children currently fighting DIPG. Our goal is to hit the mark of one million dollars donated in 2017. Consider making a donation today and at the gala. Consider making your donation a monthly donation. All contributions are tax-deductible and fund critical DIPG research and support the children and their families during their fight.

We will start sending updates about the Gala soon. We are so excited to see everyone on Wednesday, November 30th!

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 Yepez, Dennis Rodriguez, Dr. Manuel A. Moran, Elis Pacheco, Fernando Ferrer, Kenan Thompsona, 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:
Ben Velazquez, Carlos Nazario, Dean Feratovic, Edward Caban, Funk Flex, Jerry Chaparro,
J.I. Starr, Little Louie Vega, Mark Rosner, Modesto Lacen, Pablo Diaz, Paul Pristavec,
Robert Dominguez, Steven Rodas, Teddy “Tedsmooth” Mendez, Victor Martinez,
and William Pla

Follow the Cristian Rivera Foundation:

facebook youtube twitter youtube

Support the Cristian Rivera Foundation
by Purchasing a Cristian Rivera Foundation
Wristband or T–Shirt.


Follow Here to Purchase Your Own CRF Wristband or T–Shirt

Make a Tax Deductible Donation to
The Cristian Rivera Foundation
>>Follow Here<<

Three-Time Winner: Dr. Mark Souweidane Extends His Fight Against DIPG

 

In a new milestone in the fight against DIPG, Dr. Mark Souweidane this week performed a direct infusion of a cancer-fighting drug into the brain of a young patient — for the third time. The child was the first ever to receive three infusions, all at the highest dose level in the trial.

The six–year–old, who was diagnosed with DIPG in January of this year, joined Dr. Souweidane´s clinical trial in June, when he was treated with an interstitial infusion (also called convection–enhanced delivery, or CED) of a drug intended to stop DIPG´s usual relentless progression. By delivering the drug directly into the tumor site, Dr. Souweidane avoids the difficulty of getting that drug across the defensive blood-brain barrier. (See more about the trial.) The child received a second infusion in July, and then was treated for a third time this week.

“He´s recovering beautifully,” said Dr. Souweidane of the patient. “An MRI immediately after the infusion showed excellent drug distribution in the brain stem and no unexpected findings. More importantly, he is himself. When I spoke to him the day after his treatment and asked what he wanted to be for Halloween, he told me he wanted to be Darth Sidious.”

Several children have been treated twice in the trial, but Dr. Souweidane says this child was doing very well, with no disease progression, which boded well for a third treatment. The patient’s parents were also persistent in their drive to have their child treated again.

“They´re already asking about a fourth treatment,” says Dr. Souweidane. The first phase of the trial ended this summer, when the 27th and final patient was infused for the first time, but the FDA has approved repeated treatments as an extension of the trial.

It´s too soon yet to tell whether and how the repeated infusions will affect the ultimate course of this uniformly fatal disease. But Dr. Souweidane says there’s no reason why other children who were treated already, even at the maximum dose level, can´t be treated again. He´’s energized by these latest treatments, and is already looking ahead to the future.

“Each of the three infusions contained the seventh and highest dose level tested in this trial,” says Dr. Souweidane. “The ability to tolerate three infusions in such a short time, and of the maximum dose, paves the way for one of the possible next steps in this avenue of investigation, which could be to implant an infusion system to deliver the drug without repeated surgery.”

Whatever the next steps are, Dr. Souweidane promises to be at the forefront of the research.

Read the blog of Three-Time Winner: Dr. Souweidane Extends His Fight Against DIPG, click the link belowweillcornellbrainandspine.org/in-the-news/three-time-winner-dr-souweidane-extends-his-fight-against-dipg

Meet Lisha, Lisha was diagnosed with D.I.P.G. almost 4 years ago!

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Lisha is a patient of Dr. Mark Souweidane at Cornell Weill Medical Center and currently enrolled in OUR trial to find a treatment and eventual cure for D.I.P.G.

On Wed, September 21st, 2016, we learned that the results from Lisha’s last MRI were stable with no growth!

Lisha is living proof that the Cristian Rivera Foundation along with Dr.Mark Souweidane and his team at Weill Cornell are making strides in finding a cure for D.I.P.G.

Please help us cure this disease by making a tax deductible donation and raising awareness about our small foundation that is doing big things in the Cancer Community.

Remembering Our Little Angel Cristian Rivera´s 14th Birthday

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Today, 9/13/16, would’ve marked Cristian Rivera´s 14th birthday.  The Cristian Rivera honors him by raising awareness to help rid the world of D.I.P.G.  Every child should have an opportunity to grow and leave their mark on the world.

Please help us by making a tax deductible donation and/or sharing this email with your friends, family & colleagues.

Due to the tireless efforts of Dr. Mark Souweidane and Dr. Oren Becker and their dedication to the Pediatrics Neurosurgery community, we are close to curing D.I.P.G.  YOU may be the difference we need to change the world!

Dr. Souweidane Treats Final Patient in Groundbreaking DIPG Clinical Trial

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Dr. Mark Souweidane today treated the final patient in his Phase I clinical trial of convection-enhanced delivery (CED) for diffuse intrinsic pontine glioma (DIPG). The trial, which had enrolled 31 patients over the past four years, was designed to test the safety of CED as a means of delivering a cancer-fighting drug directly to the site of a DIPG tumor. (More about the DIPG trial.)

The trial received FDA approval in late 2011, and the first patient was treated in May 2012. (Read “Cheering for Caitlin,” a profile of the first patient.) Since then, 30 children have received infusions of a therapeutic agent called 124I-8H9, which consists of the 8H9 antibody (produced by mice and effective against many kinds of tumors) combined with the radioactive substance 124I. The dosage of the drug was increased over the course of the trial, also testing safety, but no dose-limiting side effects occurred in any patient.

The infusions, which were done at Memorial Sloan Kettering Cancer Center, were able to deliver the drug directly to the brain stem tumor and were not blocked by the body’s protective blood-brain barrier, which normally prevents chemotherapy drugs from crossing from the bloodstream into the brain in sufficient concentrations to attack a tumor. In this trial, Dr. Souweidane was able to achieve concentrations of 1,000 times or more than what can be achieved with IV chemotherapy. He was also able to design and test new ways to measure those concentrations at the tumor site and monitor how long the drug stayed in the tumor.

Dr. Souweidane and his team will spend the next several months evaluating the data and preparing the results for publication. In the meantime, researchers in the Children’s Brain Tumor Project laboratory have been working to pave the road for the next stages of the trial. Other drugs and drug combinations are being tested to determine what the best agents are to infuse, and at what dose levels. DIPG cell lines are also being grown in the lab, providing a rich source of information about how the tumor mutates over time and responds to different treatments in vitro as well as in animal models. (More about the Children’s Brain Tumor Project.)

Read the blog post written by Dr. Souweidane after he treated the final patient in the trial, click the link below www.weillcornellbrainandspine.org/dipg-new-beginning