April 2021 Newsletter – Happy Spring from CRF!

April is here and with it comes Spring! After a long Winter, and more time than ever spent indoors due to the pandemic, we cannot wait to welcome the sunshine and get outside. As the signs of Spring begin to develop around us, our foundation’s work also continues to evolve with the changes in our times. While the pandemic continues to ravage our world and pose daily challenges in our work and social lives, our days are marked with hope as more and more people are becoming vaccinated and outdoor activities are made viable again. That renewed sense of hope has been inspiring our everyday mission to help those affected by DIPG in every way we can. We can’t wait to share with you some updates on our work!

Carlos Colon

Carlos Colon has been involved with the Cristian Rivera Foundation for many years. He works as a software engineer manager and is also a father of three. Carlos became involved with CRF because he worked underneath our founder, John, at his old company where he first met Cristian. Carlos came to know Cristian’s loving personality and bossy persona when he visited the office and played video games while sitting on Carlos’s lap. Carlos fondly remembers Cristian as ”Little Einstein” and even named his two sons after him. After Cristian passed, Carlos decided to work with CRF to make sure that no other family has to endure the loss of their vibrant child. We are so thankful to have dedicated board members like Carlos who are helping to reach the goal of our foundation! To read more about Carlos and his favorite parts of being a CRF board member, visit the link below.
cristianriverafoundation.org/board-member-spotlight-carlos-colon/

Steve Cox

Steve Cox grew up with our founder, John, in the Bronx. The two were childhood friends and even DJ-ed together in high school. After being a DJ, Steve went on to play football in college and then ultimately obtained a job with UPS. He currently works in the electronic commerce department and helps to ensure that the tracking system for packages is top-notch and running well! Steve has been a board member since 2009. He is constantly striving to gain donors and raise awareness.  He believes that the goal of our work is to find a cure for DIPG and has expressed that, “Just because we haven’t found a cure doesn’t mean that we haven’t been successful”. Steve also believes that helping families and raising awareness are great parts of our goal and mission. You can read more about Steve and his aspirations for CRF at the following link.
cristianriverafoundation.org/steve-cox-board-member-spotlight/

Alex Arizmendi

Alex is a successful businessman who owns enterprises in several industries ranging from real estate and construction to restaurants. In his free time, Alex enjoys learning new things, investing in the latest technology, and listening to music. Alex has a compassionate heart and that can be seen through his work in various non-profits. Alex and our founder John “Gungie” Rivera have known each other since they were teenagers and reconnected a few years ago. When John shared the tragedy of losing his son Cristian, Alex knew he had to help and became a CRF board member. As a board member, Alex hopes to continue the foundation’s fight against DIPG and spread awareness of this horrible disease. Read more about Alex at the link below!
cristianriverafoundation.org/board-member-spotlight-alex-arizmendi/

Jace Ward Update

It was not long ago when Jace attended our 2019 gala and inspired all of us with hope in his battle with DIPG. Over the past few months, Jace participated as the 2nd patient in the CAR-T Cells clinical trial at Stanford University. As a result, Jace’s tumor was reduced by 50%! Shortly after, a cyst was found which required immediate treatment. Jace plans to participate in the 3rd round of the CAR-T cell infusion without the cyst so the T-cells could go directly to the tumor. On top of all this, Jace continues to take classes online at Kansas State University and holds an internship with Reed Jobs (Steve Jobs’ son) and the Emerson Collective on trying to change advocacy and policy on DIPG. Every day we are inspired by Jace and his family! Read more at:

cristianriverafoundation.org/catching-up-with-jace-ward-22-year-old-dipg-hero/

Maria Kuenster Update

We connected with Maria Kuenster, a 23-year-old woman fighting DIPG in January 2021. Since then, we have followed along on her courageous battle. Maria began the CAR-T Cell Therapy trial in Seattle in early January. She spent eight weeks receiving four rounds of infusions and is now back in her hometown of St. Paul, Minnesota. She plans to continue to receive infusions outside of the trial and will fly to Seattle every two weeks for this treatment. The Cristian Rivera Foundation is thankful for courageous people like Maria who share their stories and advocate for DIPG. We will continue to spread awareness of DIPG until a cure is found. Read more about Maria’s experience on this clinical trial here:
cristianriverafoundation.org/beyond-the-tumor-an-update-on-marias-fight-against-dipg/

Dylan Jude Harrell

Dylan was the epitome of sass and humor. According to her mother, she loved to crack jokes about others but was also very kind. She was diagnosed with DIPG after several misdiagnoses by her ophthalmologists, unfortunately, the cancer was aggressive and eventually spread to her spine. DIPG claimed her life in April 2020, and Dylan’s parents have started an organization dedicated to raising awareness about DIPG as just one of many pediatric cancers with research programs that are underfunded. We’re grateful to have folks fighting toward the same mission. Read more about Dylan’s story at the full article here:

cristianriverafoundation.org/dylan-jude-harrell/

2021 CRF Raffle Project

Happy Spring!

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!

• 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.

Founder:
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.

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

Chairman of the Board:
Andy Epstein


Director:
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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