Cristian Rivera Foundation 2019 January NewsletterWhat a year it has been! 2018 was a year of growth, a year of change, and another year closer to finding the cure for DIPG! Our Founder, John “Gungie” Rivera and committee member, Robert Vazquez, collaborated to write a Children’s book entitled, “Cristian’s Journey”. The foundation’s first publication, “Cristian’s Journey”, was released to help raise awareness and inspire people to become involved with the work taking place globally for pediatric brain cancer research. This beautiful story depicts Cristian’s journey of love and benevolence throughout the big city. This book is a tale about passion and never giving up despite the odds you may face. 100% of the proceeds of the purchase of this book will be donated to pediatric brain tumor/DIPG research and clinical trials. Have you checked it out? Follow this link to purchase the book cristianriverafoundation.org/cristiansjourney.html In addition to “Cristian’s Journey”, our 2018 events included the following special events, all designed to raise awareness for pediatric brain cancer research: We launched our 1st Annual Cristian Rivera Foundation “Full Steam Ahead” 5k Walk/Run. We hosted our 3rd Annual Cristian Rivera Foundation Freestyle Flashback Benefit Boat Ride. We hosted our milestone 10th Annual Cristian Rivera Foundation Celebrity Gala and honored a variety of celebrities and doctors for their philanthropy. (Check out the Photos and Video of this amazing event). Thank you for your continued support by attending, sponsoring, and donating to the Cristian Rivera Foundation. Hosting these events have brought us to monumental milestone’s within the DIPG and medical community. As of the end of 2018, the Cristian Rivera Foundation has donated well over One Million Dollars ($1,000,000) to help support research and clinical trials for pediatric brain cancer/DIPG, and families who have been affected by this disease. Thank you for your love, passion, and for most importantly keeping these young children and their families in mind. By your giving efforts, we are now closer than we’ve ever been to finding the cure for DIPG. Be proud- this is all possible because of You! We would like to take the time to express our gratitude to some key players within our Foundation. Thank you to our Board of Directors, Committee Members, and our Committee Friends. Thank you all for your support, your deep desire to finding a cure for DIPG, and your genuine fellowship at our 2018 events. A very special thank you goes to Dr. Mark Souweidance and Dr. Oren Becher for working tirelessly towards finding a cure for DIPG. Without you all playing a major role within our foundation, none of these milestone’s and accomplishments would have been possible. One of our clinical trial patients, Lisha, Ayala, has reached a monumental milestone in her life by reaching a 6 year mark with no growth in her tumor! She is living the life of a normal teenager and continues to give hope to the DIPG and medical community. Lisha Ayala reminds us that with faith, your support, and help from the medical community, nothing is impossible. We remain steadfast in doing all that we can to make sure the DIPG children and their families are diagnosis free and we are believing together that we are a few steps closer than we have ever been before. As you can see, we left 2018 and started 2019 on a great note but January is always a sad month for The Cristian Rivera Foundation. First, Cristian was Diagnosed with DIPG on January 21st, 2007 and lost his Battle to DIPG just two short years later on, January 25th, 2009. Cristian would have been 16 years old had he’d been alive today. In honor of Cristian, our foundation will continue working the “Full Steam Ahead” mentality until we eradicate this disease from our world and no family has to suffer through the process of dealing with a child with DIPG. You can be a part of the journey of finding a cure for DIPG, and make 2019 the year we say goodbye to this horrible disease. Simply stay connected with us. Join us at our events, share our journey with your family and friends, and please make efforts to our donation. Follow here to view our video that highlights our mission, vision, and objective of the Cristian Rivera Foundation. Speaking of great supporters and being part of our journey, The Cristian Rivera Foundation highlighted Member of the Month is Committee Friend, Vanessa Rodriguez. Using her experience and resources, Vanessa has been an incredible addition to our team and made valuable contributions to our goals through her hard work and dedication. Who is Vanessa Rodriguez? Vanessa, a native New Yorker, is a real estate sales agent with The Corcoran Group. She advises clients at all price points and stages, from first time home buyers to seasoned international investors. She loves the city and all things cultural. She attended St. Jean Baptiste High School in the Upper East Side and graduated from Columbia University. When she’s not working with her clients selling properties or partaking in community events, Vanessa enjoys the small things in life: exploring new restaurants, Broadway theatre, making dinner with family, and going for walks and runs with her 2 doggies – Remy, the Miniature Pinscher and Jimmy, the Boxer. What does it mean to you to be a part of the Cristian Rivera Foundation? It means a lot! I have learned the importance and power in giving back. I am truly honored by being a part of the Cristian Rivera Foundation, it is truly amazing. With the Cristian Rivera Foundation, I am able to help raise awareness and most importantly, give back to DIPG patients. The DIPG patients are children who are helpless when it comes to their health. The least I can do is give back, raise awareness, and be proactive so people are more aware and knowledgeable about the diagnosis. What are your proudest moments as a Cristian Rivera Foundation Committee Member? Some of the many proudest moments I have being a committee member is being able to educate others on DIPG and help advocate to spread awareness. I am proud to share with others how DIPG affects children and how I can help find ways to help raise awareness. I am also proud of the contributions I have made in a short period of time through my donations and raising donations through my network. 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 cristianriverafoundation.org/donation.html. All donations are appreciated and go a long way. Please be sure to follow us on Twitter @TweetCRF, Instagram @cristianriverafoundation and like us on Facebook at facebook.com/crisitanriverafoundation 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.|
|How Can You Help:|
|Available Now Cristian´s Journey A Story Inspired by John “Gungie” Rivera, “Forever Cristian´s Daddy”|
The Cristian Rivera Foundation
|Copyright © 2019 Cristian Rivera Foundation, All rights reserved. Our mailing address is: Cristian Rivera Foundation PO Box 656. Edgewater, NJ 07020 cristianriverafoundation.org|
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. 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
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:
Thank You again and may this be the year we say goodbye to DIPG, (Diffuse Intrinsic Pontine Glioma), FOREVER!
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, 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: