We Love You 10! February 2021 Newsletter

February 2021 Newsletter

February, the month of love, is here. Through any adversity, love and compassion have always been the forces to get us through. This month we’re sharing stories of how caring for others is the fuel behind changing the lives of those affected by DIPG. We introduce you to our two new Board Members who joined our organization out of their love for families and their hope for the bright future of children everywhere. We will also share stories of some brave young people who are currently facing DIPG and what you can do to support them in love today.

New Board Members 2021

Melinda Colon Cox is a Commercial Litigation Partner at Parker Ibrahim & Berg LLP. She is a proud Puertorriqueña and is happily married to Kevin E. Cox with whom she has a beautiful 2-year old son, Logan Carter Cox. Melinda is actively involved in promoting and developing the advancement of Latinxs in the legal profession and community at large and finds passion in helping others in need.

Melinda Cox

Melinda Colon Cox

"I joined this all-too-important organization because of my love for children – our future – because their lives matter, and because I believe in the strength and power of collaboration and unity. Together we can and we will make a difference."

Michael Narvaez is a 20+ year veteran of Wall Street Investment Banks and Owner of ANS Entertainment LLC, a boutique DJ and event services company. After losing his cousin, Santiago Buther, to DIPG last year, Michael was moved to join CRF and help make DIPG a thing of the past.

Michael Narvaez

Michael Narvaez

"Sadly, this January when Santiago gained his wings, a sense of communal responsibility was awoken within me again. I am firmly committed to help prevent any other child and their family from having to suffer this type of loss. To not combat this disease would be a waste of my time on this Earth."

Our DIPG Warriors



Our favorite valentine, Emiliano, has been continuing to fight strongly against DIPG. Over the past few months, our team has been working hard to help Emi’s family find promising treatment and funding. Their love for Emiliano is overwhelming and empowers all of us to remain relentless and never give up hope. If you are able, send Emiliano and his family some love and consider donating at the following link.



Jillian Aguila Retolado is a sweet, outgoing 6-year-old girl who loves princesses and dressing up. On Nov. 24th, 2020, she was diagnosed with DIPG leaving her family in heartbreak and shock. Jillian is currently going through radiotherapy and unfortunately, there are no clinical trials available where she lives. Jillian has been incredibly brave and hasn’t given up hope throughout her journey. She has continued to stay smiling and her love for her brother, who’s only a year older than her, keeps her going each day. Jillian’s family hopes to raise funds to cover the costs of the rest of her radiotherapy sessions and medications and to give Jillian some toys to bring her some joy during these difficult times. We know that love and compassion have the ability to change lives. Please donate what you can and send love to Jillian and her family at the following link: paypal.com/paypalme/ivyaguila

Emiliano Heart Jillian

Beyond the Tumor

Beyond the Tumor

CRF has begun a new initiative called ‘Beyond the Tumor’, a series of articles featuring the stories of current DIPG warriors. We’ve had the opportunity to interview some incredible individuals, including 22- year-old Maria Kuenster who found out she has DIPG right after graduating college. In place of accepting a new job offer, Maria had to research clinical trials in order to save her own life. She is now taking part in the CAR-T Cell Therapy trial at Seattle Children’s hospital and we will be keeping up her progress.

By connecting with these warriors, we hope to share their unique experiences, hear about their treatments, and explore how we can best show them love and support through their journey. So far, they have all captured our hearts and we can’t wait for you to meet them too.

You can stay up to date with their stories by following us on social media and checking out our weekly articles on Warrior Wednesdays!

Research Updates

As much as we love getting to know our DIPG warriors, we know that finding a cure is what will ultimately allow them to lead full lives and fulfill their true potential. For the month of love, our hearts also go out to the DIPG researchers and doctors who work day in and day out in search of a cure. A cure for DIPG is possible and it is important to stay up to date on the most recent research on brain tumors and pediatric cancers to understand what scientists know about DIPG. We’ve been staying informed and sharing the latest science through weekly articles and tweets. Recently we’ve shared about the top approaches to DIPG treatment, new funding for a research project in Europe, a mouse model discovery from a lab at the University of Michigan, and FDA protocols. You can stay up to date too by following us on social media and checking out our articles every Friday!

HEart Envelope

A Love Note for You!

The Cristian Rivera Foundation is full of love for our warriors, researchers, board members, and donors who believe in and support our mission. As we work hard each day to spread awareness, fundraise for research, and help DIPG families, it’s your love and support that keep us going. From the bottom of our hearts we hope you all have a Happy Valentine’s Day and continue to stay safe. Full Steam Ahead!

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),


Cristian Rivera Foundation

John “Gungie” Rivera
"Forever Cristian’s Daddy"

Board of Directors:
Carlos Yepez and Darlene Rodriguez.

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

Ben Velazquez, David Rodriguez,
Dr. Manuel A. Moran, Karla De Epstein,
Michael V. Narvaez, and William Pla.

Chairman of the Board:
Andy Epstein

Sarde Laurente

Committee Friends:
Alberto Torres, Edward Caban, Ed Martin,
Maggie Meehan, Mark Rosner, Melinda Colon Cox,
and Vanessa Rodriguez.

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


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Copyright © 2021 Cristian Rivera Foundation, All rights reserved.

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