DIPG News

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
2018 February Newsletter

Cristian Rivera Foundation
February 2018 Newsletter

February 2018 Newsletter
February 2018 Newsletter


Cristian Rivera Foundation 2018
February Newsletter

February is a special month; A time to display your feelings for your friends and family for their love and support throughout the year. This February has been an amazing month for the Cristian Rivera Foundation, and that’s all because of your love and support of our foundation.

This past week, Lisha Ayala, A DIPG patient who is participating in the clinical trials that the Cristian Rivera Foundation is funding, received her quarterly MRI results.  The tests were stable with no activity or tumor growth!  This is her 5th year living with DIPG, providing the medical community an opportunity to learn more and make monumental strides in research.

Lisha continues to live the life of a normal teenager and has given us hope that we are close to a cure.  This is all possible through your love and support of our mission.

The Cristian Rivera Foundation also hit another milestone this month by receiving a Platinum status on GuideStar.org

GuideStar.org is the non-profit industry leader in analysis and public information.   Guidestar.org issues their rating on transparency and the positive activity conducted in the non-profit community.

The Cristian Rivera Foundation is honored to be awarded a Platinum Status for our efforts, commitment and transparency.

One can only be excited for what’s to come the next couple of months. Our foundation has so many events planned for 2018.  We have our Raffle Project, the 1st Annual Cristian Rivera Foundation “Full Steam Ahead 5K” Sat June 9th, the 3rd Annual Cristian Rivera Foundation Freestyle Flashback Boat ride Sat July 21st, The Children’s Book “Cristian’s Journey” will be out in the Spring and the 10th Annual Cristian Foundation Celebrity Gala will take place on Wednesday, November 14th.

Please visit our website at cristianriverafoundation.org and stay connected with all of our events, view our gallery and sign our guestbook to let us know you stopped by!

We would like to thank everyone who has supported our foundation by attending, sponsoring, and donating. Lastly, all of us at the Cristian Rivera Foundation wish you a very happy Valentine’s Day! Show love to our foundation with your kind donation today!

Speaking of great supporters and being part of our journey, CRF’s highlighted Member of the Month is Cristian Rivera Foundation Committee Member Paul Pristavec. Paul has been an incredible member.

Who is Paul Pristavec?
Paul Pristavec, a Staten Island native father of 6, is a Wealth Management Advisor at Merrill Lynch. He joined Merrill Lynch in 1992 and has been advising high net worth individuals and wealthy families since 1996. He is a parishioner of Our Lady Star of the Sea Roman Catholic Church and is involved in charitable work for the Archdiocese of New York.  Paul Coaches CYO basketball at Our Lady Star of the Sea. Paul loves to take his children to all their sporting events. Paul and his wife Dana reside in the Tottenville section of Staten Island.

What does it mean to you to be a part of the Cristian Rivera Foundation?
Being a part of the Cristian Rivera Foundation is rewarding in so many ways. Being a father of 6, I can’t imagine what it must feel like to lose a child. It means so much to me to be a part of an organization that is giving back and making a difference in the lives of so many children and families.  

What is your proudest moment as a Cristian Rivera Foundation Committee Member?
My proudest moment as a Cristian Rivera Foundation Committee Member was on Wednesday, February 7, 2018, when I learned about Lisha’s progress. Lisha’s MRI results came up favorable and I’m honored to have been a part of that. This is a reminder of why I am involved in the Cristian Rivera Foundation and put in the time that I do. Lisha is proof that we are headed in the right direction and that one day, we will not fear DIPG.

All donations to the Cristian Rivera Foundation are tax deductible and money raised by the Cristian Rivera Foundation goes to the suffering families, doctors and hospitals working tirelessly towards finding a find for the deadly pediatric brain tumor known as DIPG.

To give a donation, please visit http://cristianriverafoundation.org/donation.html
All donations are appreciated and go a long way. Please be sure to follow us on Twitter @TweetCRF, Instagram @cristianriverafoundationand like us on Facebook at www.facebook.com/crisitanriverafoundation to stay up to date on the latest news and all of our exciting new upcoming events for 2018!

Our MissionThe mission of the Cristian Rivera Foundation is to help find the cure for

Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable
and incurable 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 Ann & Robert H. Lurie Children’s Hospital and the Lurie Cancer center at Northwestern University. Both Doctors are conducting promising research and trials 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
Pre-Order
Cristian´s Journey
A Story Inspired by John “Gungie” Rivera, “Forever Cristian´s Daddy”
Cristian's Journey

Written by John “Gungie” Rivera
and Robert Vazquez

>>Follow Here to Pre-Order
your Copy Now<<

$20
$5 for Shipping & Handling

Proceeds from the purchase of
“Cristian´s Journey” will be donated to support
D.I.P.G. research and trials at
Weill Cornell Medical Center. Thank you for bringing us closer to a cure.

Sincerely
The Cristian Rivera Foundation

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

Board of Directors:
Andy Epstein and Darlene Rodriguez.
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Committee Members:
Aldo Marin, Alex Garcia, Carlos Colon,
Carlos Yepez, Ed Martin, Elis Pacheco,
Fernando Ferrer, Jarrad Seuferling,
Jesse Allison, Kenan Thompson, Louie Vega,
Luis Guzman, Meiling Macias Toro, Nirav Patel,
Paul Pristavec, Rafael Toro, Ramon E. Javier,
Robert Vazquez, Steve Cox, Tony Ferrara
and Vito Bruno.

Director:
Vicky Estrella

spac Committee Friends:
Ben Velazquez, Dr. Manuel A. Moran,
Dennis Rodriguez, Edward Caban,
Mark Rosner, Modesto Lacen, Pablo Diaz,
Robert Dominguez, Teddy “Tedsmooth” Mendez
and William Pla.
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Honorary Committee Members:
The Late Anthony Mason
and The Late Miriam Colon.
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Supporters:
Ami Ferrara, David Rodriguez,
Ginalisa Monterroso and Karla De Epstein

 

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Copyright © 2018 Cristian Rivera Foundation, All rights reserved.

Our mailing address is:
Cristian Rivera Foundation PO Box 656. Edgewater, NJ 07020
cristianriverafoundation.org

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

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

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

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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
FACE TO FACE
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 CristianRiveraFoundation.org

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!

PLEASE DONATE
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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, 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

Follow the Cristian Rivera Foundation:

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Dr. Mark Souweidane on Humans of NY

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Humans of NY has been doing a 2–week series on pediatric cancer (patients, families, providers) at Memorial Sloan Kettering. Mark Souweidane was interviewed for the series on Tuesday and his segments were posted on Wednesday. It has been an amazing phenomenon for two straight days now – literally hundreds of thousands of comments, likes, shares, and a veritable outpouring of support and love for Mark and his work. You really have to see it to believe it – and it’s truly amazing to read the comments and see the project through the eyes of people hearing about it for the first time.

To Read About it, click the link below www.humansofnewyork.com/post/144608280536/44-my-childhood-was-building-things-model

The Cristian Rivera Foundation is very saddened by the passing of Lauren Hill who succumbed to DIPG this morning, Friday April, 10th 2015. Her courage and drive was an inspiration to all of us. She will never be forgotten.