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August 2020 Newsletter

Cristian Rivera Foundation 2020 August Newsletter

Happy August from all of us here at CRF! August is World Cancer Support Month. Do you know someone living with cancer or another serious illness and want to show them that you care? Here are some of our best tips to show your loved ones some support:

  1. Ask permission before visiting them or giving advice
  2. Laugh together but also allow for sadness
  3. Try talking about things unrelated to cancer or illness
  4. Check-in with them often
  5. Donate what you can towards fundamental research and trials
  6. Treat them the same!

Many of these tips came from speaking with families who’ve experienced loss themselves due to DIPG. For August, we continued our Warrior Wednesday series and shared the unique stories of many of our DIPG angels – including details about what it was like when they were diagnosed to their overall journey of strength and resilience in the face of DIPG. No matter whose story you read, you’ll find that every single child had a unique and special light that shined in a brilliant way for the short time they were with us. Would you like to feel inspired and empowered today? You can find all of our Warrior Wednesday stories here.

This month we also had the opportunity to interview Dr. Kathy Warren, the clinical director of pediatric neuro-oncology at the Dana Farber Institute. Last year, we honored Dr. Warren at our 11th Annual CRF Celebrity Gala with the Vision of Hope Award for her courageous strides within the DIPG community. We were able to speak with her personally on what DIPG is really like, the state of DIPG research today, and what needs to be done to continue making progress towards better treatment.

Dr. Warren compared DIPG to sprinkling sand on a lawn and trying to pick up all the grains, which makes it incredibly hard to treat. Since its discovery in the 1960s when Neil Armstrong’s daughter was diagnosed, scientists have been able to differentiate DIPG from other brainstem tumors. They’ve also learned more about the biology of the tumor and have created targeted dosing for drugs. The number of active clinical trials has notably increased which allows more DIPG-specific drugs to be tested. However, each clinical trial has less than a handful of slots open for patients to be treated which can be extremely frustrating for DIPG families. More funding towards clinical trials allows more slots to open up for children to receive treatment.

Dr. Warren is incredibly grateful for nonprofit foundations like ours that continuously work to raise money for this cause. Her research team relies heavily on money from smaller private foundations because government-funded pediatric cancer research is rare. The sad reality is that the government will prioritize more common forms of cancer such as lung cancer because they know it is most beneficial. Children with cancer often suffer at the hands of these decisions because nobody really prioritizes them. Help us show that children’s lives matter and are a priority. Please donate what you can towards DIPG research here. You can also read our full story on our interview with Dr. Warren here.

Nobody knows more about facing DIPG personally and the obstacles met within DIPG research than CRF founder John “Gungie” Rivera. This August marks his birthday month and we want to give him our sincerest thanks for all of the lives he has touched and changed by forming the Cristian Rivera Foundation. We’d also like to wish all our board members in August a very happy birthday and a huge thank you for your continued support to this important cause.

With the end of August underway, we hope you can soak up every last bit of the summer sun and enjoy some relaxation before September begins. To all the families with youths going back to school, we wish you health and safety during this uncertain transition into normalcy. We understand that this time can be a little bit stressful, so we’ve provided some easy and delicious back-to-school snacks that both kids and parents will absolutely love. Ever heard of Apple Nachos? Check out how to make Apple Nachos along with many other simple and yummy recipes here.

Until September, stay safe and Full Steam Ahead!

Check Out These Links!:
Warrior Wednesday Stories
A Conversation with Dr. Kathy Warren of the Dana Farber Institute
Make a Donation towards DIPG Research
Apple Nachos and other Easy Back-to-School Snacks!

Our Mission

The 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),


Available Now
Cristian´s Journey
A Story Inspired by John “Gungie” Rivera, “Forever Cristian´s Daddy”

Cristian's Journey

Written by John “Gungie” Rivera

Available on our website

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.

The Cristian Rivera Foundation

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

Chairman of the Board:
Andy Epstein

Board of Directors:
Carlos Yepez and Darlene Rodriguez.

Committee Members:
Aldo Marin, Alex Arizmendi, Alex Garcia,
Carlos Colon, Ed Martin, Elis Pacheco,
Fernando Ferrer, Francesco Quattrone,
Jarrad Seuferling, Jesse Allison,
Kenan Thompson, Luis Guzman,
 Meiling Macias Toro, Paul Pristavec, Rafael Toro,
Rena Kliot, Steve Cox, and Vito Bruno.

Committee Friends:
Alberto Torres, Ben Velazquez,
Dr. Manuel A. Moran, Edward Caban,
Maggie Meehan, Mark Rosner, Modesto Lacen,
Robert Dominguez, Vanessa Rodriguez
and William Pla.

Honorary Committee Members:
The Late Anthony Mason
and The Late Miriam Colon.

David Rodriguez, Karla De Epstein,
Pablo Diaz and Ramon E. Javier


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Copyright © 2020 Cristian Rivera Foundation, All rights reserved.

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

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