Greetings from the Cristian Rivera Foundation.
Though our month-long billboard campaign came to a close, the Cristian Rivera Foundation is showing no signs of slowing down. Our billboard has earned such overwhelmingly positive responses from friends, family and even strangers. It has truly been touching and it’s shown us that our quest to raise awareness about Pontine Glioma is working.
The Cristian Rivera Foundation has also caught the attention of one of our peers, the Children’s Brain Tumor Foundation. John “Gungie” Rivera recently attended the foundation’s 8th Annual Dream and Promise Awards Benefit, where he got to meet the parents of both survivors and casualties of brain tumors, including Pontine Glioma. “To have a foundation that's been around for 22 years invite me to their event and recognize a foundation like mine-one that's not even one year old-really felt good,” John said about the event. You can read more about this in his journal at www.cristianriverafoundation.org/journal.
John also attended Project Sunshine’s Seventh Annual Benefit Celebration: "United We Shine" at the Waldorf Astoria as the guest of recent Committee Member Khaliah Ali. We can no longer call her our newest Committee Member because two other successful people have recently signed on to help our Foundation with its cause:
Luis Guzman is a character actor from New York who has appeared in countless movies and television shows. Most recently, Guzman appeared in HBO’s hit series How to Make it in America. He has also been seen on Oz, Law and Order, NYPD Blue and Walker, Texas Ranger, as well as in feature films like The Taking of Pelham 1 2 3, Carlito's Way, Magnolia, Out of Sight, Boogie Nights, Punch Drunk Love, Traffic, Anger Management, and School for Scoundrels. 
Alex Garcia is a Nuevo Latino chef who has appeared on the Food Network and written cookbooks like In a Cuban Kitchen. Garcia attended the Culinary Institute of America and later worked alongside famed Nuevo Cuban chef Douglas Rodriguez for four years at Yuca restaurant in Miami. Garcia has been involved with many highly-respected New York restaurants, including Erizo Latino in Soho, Babalu, Patria, Calle Ocho and, most recently, Habana Room. I’ve mentioned in past newsletters, the Cristian Rivera Foundation has pledged funds to Dr. Mark Souweidane, one of the doctors who performed a routine shunt surgery on Cristian. Dr. Souweidane offered an explanation of what he calls a “novel theraputic approach” and why his research is so promising and revolutionary:
For over a decade Dr. Mark Souweidane’s laboratory has been committed to the mission of offering children with diffuse intrinsic pontine glioma (DIPG) a safe and novel treatment option. That exploration is finally coming to realization with the promise of helping children with little options. DIPG is currently incurable. It is located in the brain stem, a central and critical structure where vital and basic functions are controlled. The tumor is highly infiltrative, which means the cancer tissue is intertwined with normal brain tissue. This location and pattern of growth make surgical removal impossible and unsafe. The current treatment approach is radiation therapy. However, it is expected that all children will eventually progress and succumb to this dreadful disease within a year. Therefore there is an urgent need for a new approach to treating this incurable cancer of childhood.
The blood vessels in the brain are different from those in other parts of the body in that there is a barrier called the blood-brain barrier (BBB) separating the blood and the brain. This barrier, in normal conditions, protects the brain from bacteria and toxins. However, this barrier also prevents many therapeutic drugs from entering the brain and the tumor. This is believed one of the major reasons that current chemotherapy is not effective in treating this disease. The drug delivery method called convection-enhanced delivery (CED) bypasses the BBB thus delivering drugs directly to the tumor.
Finally after 12 years of preclinical testing, Dr. Souweidane and his colleagues have designed a treatment option for children with DIPG that uses CED and a tumor specific agent called a monoclonal antibody. Dr. Souweidane is confident that the clinical trail will open this year, but is in need for further funding to conduct the study. Support for such novel therapeutic approaches is critical since the costs will not be covered by insurance companies. Additionally, the laboratory of Dr. Souweidane continues to explore other novel treatment options for these children by exploring the molecular features of these tumors and methods to track therapeutic agents once delivered by CED in the brain stem.
Cristian Rivera made his presence felt everywhere he went. While working for Victory 2 Multimedia as Cristian’s dad’s marketing director, I would be sitting at my desk with the door open and Cristian would come strolling into the office like a top-level employee. He would ask me to do my Donald Duck impression… man did he get a kick out of that. I would look at him and ask where is he. He would say “who?” and then I would say, in that voice, “Donald Duck” with the Donald laugh…I can never forget the response I got. His face would light up! I got a kick out of the fact that no matter how many times I would do the same thing, it would get the same response. He was always drawing. Paper and pencil in hand, he would come into my office searching for markers that he knew I had stashed. He would sit and start drawing whatever came to mind at the time…never a set plan. That boy made me laugh out loud many times. One of my favorite moments was when he walked into my office, grabbed the newspaper and taped it to my desk, making a “curtain.” Next thing you know it became a Fort with the entire desk draped in newspaper. He happily played with some Thomas trains, peaking out every now and then to make sure I was still standing guard. I always asked myself, “is this kid only 5 years old???” What a treasure.
I came into Cristian’s life when he was four years old , only a short time before he was diagnosed with Pontine Glioma. Even at four , the knowledge he possessed was shocking, as he always seemed to know more than his years . He had an uncanny ability to read people and was surprisingly accurate in his results. Coming into his life as a stranger and seeing how he responded to those he did not know ( or trust), I was a little nervous that Cris would not care much for my company. At first he didn’t even care to know my name. My worries were for naught though, as the bond between Cris and I grew. Once he started speaking to me it was hard to get him to stop . When he did , it was very likely to hear him call out BUH-GINIA within the minute! I never expected I would be so enraptured by Cris, but he had proven himself irresistible. Everyone wanted to be his friend, but I actually achieved it! Caring for Cris was a different experience then I was accustomed to . As a sitter one hopes to create a strong bond through support and various educational tactics, and to leave a lasting positive impression on a child’s life. I do believe in this situation Cris was the one who left a long-lasting impression on me. Falling in love with this exceptional child was easy as everything he did proved inspirational and intelligent. I will never forget the impact he has made on my life. Sincerely,
John “Gungie” Rivera, “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Committee: Alex Aviles, Alex Garcia, Andy Epstein, Anthony Mason, Bill Marin, Boy Wonder, David Maldonado, Denise Miranda, DJ Camilo, DJ Funkmaster Flex, DJ Tedsmooth, Dr. Ben Velazquez, Dr. Mary Saleeby, Edward Caban, Elis Pacheco, Fernando Ferrer, Hamlet Peralta, James Cruz, James R. Cotto, Jay Hernandez, Jay Marin, Jeff & Valerie Lavino, Jim Jones, Jimmy Rodriguez, J.I. Starr, John “Jellybean” Benitez, Jessy Terrero, Johnny Nuñez, Jose Alberto “El Canario,” Joseph Mbeh, Kamar De Los Reyes, Kenya Bradix, Khaliah Ali, Little Louie Vega, Luis Guzman, Maria Marin, Mark Rosner, Mathew “Mateo” Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Pablo Diaz, Ralph Mercado III, Ray Wong, Ricardo Cardona, Solange Osorio, Steve Cox, Ulysses Terrero, Vic Latino, Victor Martinez and William Pla.
