The Cristian Rivera Foundation Mission Statement

Cristian & John at the Pool
On January 22, 2007, I received the worst news of my life. My 4-year-old son, Cristian, was diagnosed with an inoperable Pontine Glioma brain stem tumor, which generally affects kids 1 to 9 years old. It has no cure and it also has a life expectancy of 3 to 18 months. Cristian’s battle for his life lasted 2 years and a few days (passing away on January 25, 2009) but the new battle in honor of his new life has begun.


Cristian, I love and miss you dearly. Ever since you passed away, I committed myself to help find a cure for this deadly disease so that no other family would have to go through the grief of losing their beloved children. In keeping with this commitment, I have created the Cristian Rivera Foundation in your honor.

– John “Gungie” Rivera, Founder of the Cristian Rivera Foundation and Forever Cristian’s Daddy


Cristian Rivera’s journey and determination inspired his father, John "Gungie" Rivera, to start the Cristian Rivera Foundation, a New York City-based 501(c)(3) not-for-profit organization, that is committed to finding a cure for Diffuse Intrinsic Pontine Glioma (DIPG) through education, program funding and family support.

The foundation strives to increase public awareness and understanding of Pontine Glioma, as well as raise funds that will support medical facilities and scientific trials whose primary focus is to find a cure for the disease. This is achieved by fundraising events, monthly newsletters, media outreach and other methods designed to educate and enlighten those in the community who are not aware of Pontine Glioma and its devastating effect on children and families.

Through its many efforts, the Cristian Rivera Foundation has helped build the foundation that supports the groundbreaking research that will one-day cure DIPG. In 2012, Dr. Mark Souweidane, the Director of the Pediatric Brain and Spine Center at Weill Cornell Medical Center and Memorial Sloan Kettering, officially launched a pioneering clinical trial that would test the safety of a highly innovative approach using a small fiber to directly deliver drugs into the tumor.

“Finally, after years of preclinical testing, [my colleagues and I] have designed a treatment option for children with DIPG that uses convection-enhanced delivery (CED) and a tumor specific agent called a monoclonal antibody. The drug delivery method of CED bypasses the blood-brain barrier (BBB), a structural interface that isolates the brain from the blood. This delivery method has the dual potential benefit of getting high therapeutic doses of drugs into the tumor while totally avoiding any systemic exposure or toxicity.”

“Finally, after years of preclinical testing, [my colleagues and I] have designed a treatment option for children with DIPG that uses convection-enhanced delivery (CED) and a tumor specific agent called a monoclonal antibody. The drug delivery method of CED bypasses the blood-brain barrier (BBB), a structural interface that isolates the brain from the blood. This delivery method has the dual potential benefit of getting high therapeutic doses of drugs into the tumor while totally avoiding any systemic exposure or toxicity.”

On May 1st, 2012, the date of his first official surgery, as part of the clinical trial, Dr. Souweidane said with pride, “Today, the first day of Brain Tumor Awareness Month… marks a day of hope for her family, an entry into a new treatment approach for these children, and the culmination of over 15 years of translational research.”

Complementing Dr. Souweidane’s amazing work is the enlightening research being performed at the Ann & Robert H. Lurie Children’s Hospital and the Lurie Cancer center at Northwestern University lab of Dr. Oren Becher. The Cristian Rivera Foundation is proud to support Dr. Becher, helping him and his team to develop genetic models of DIPG to better understand the function of genetic alterations in DIPG formation, specifically the genetic alterations that are most important to inhibit therapeutically.

”Recently, we, and others have co-discovered an abnormal cell surface receptor called ACVR1, found in the tumors of a quarter of patients with DIPG, and which promotes DIPG tumor growth. We developed a new model that incorporates this abnormal ACVR1 and we are currently trying to understand how it contributes to DIPG as well as determine whether ACVR1 inhibitors are a good idea to treat DIPG” said Dr. Becher. “In addition, we are continuing to study a particular mutation in a histone gene that has been identified in the majority of human DIPGs and looking for ways to target it. With regards to the translation of novel agents into clinical trials, we have translated a CDK4-6 inhibitor into a clinical trial for children with recurrent brain tumors through the PBTC. This is the first time that this class of drugs is being evaluated in children with brain tumors.”

”Recently, we, and others have co-discovered an abnormal cell surface receptor called ACVR1, found in the tumors of a quarter of patients with DIPG, and which promotes DIPG tumor growth. We developed a new model that incorporates this abnormal ACVR1 and we are currently trying to understand how it contributes to DIPG as well as determine whether ACVR1 inhibitors are a good idea to treat DIPG” said Dr. Becher. “In addition, we are continuing to study a particular mutation in a histone gene that has been identified in the majority of human DIPGs and looking for ways to target it. With regards to the translation of novel agents into clinical trials, we have translated a CDK4-6 inhibitor into a clinical trial for children with recurrent brain tumors through the PBTC. This is the first time that this class of drugs is being evaluated in children with brain tumors.”

It is research like this that gives us hope that the Cristian Rivera Foundation’s dream of a world without DIPG will soon become a reality. The Cristian Rivera Foundation has pledged its support to Dr. Souweidane and Dr. Becher as they execute their important research and clinical trials.


The Cristian Rivera Foundation also supports the research of Dr. Oren Becher of Duke University. His lab builds mouse models of Pontine Glioma tumors in order to better understand the makeup of these tumors, specifically the genetic alterations that are most important to inhibit therapeutically.


The Cristian Rivera Foundation is dedicated to supporting promising, innovative research like this in pursuit of a cure.