Monthly Newsletter January 2012

Happy New Year from the Cristian Rivera Foundation.

January is always a difficult month for us because January is the month when Cristian Rivera lost his hard-fought battle with DIPG after two years. On January 25, 2009, the world lost a smart, brave and all-around remarkable 6-year-old boy. Three years later, we remember Cristian on the anniversary of the day he earned his wings and went to Heaven. Cristian is loved and missed dearly by his father John “Gungie” Rivera, his mother Jenelle Asencio, his big brother JC, his sister Brittnee Hudson, the rest of his family and friends, and everyone at The Cristian Rivera Foundation.

Wednesday, January 4, 2012 marked two years since DIPG took the life of another amazing young boy named Javier "Buji" Villamil. During his short life, Buji was a great athlete who loved sports, George Lopez, iCarly and Scooby Snacks fruit snacks. He earned his wings a few months shy of his 12th birthday and will forever be missed by his family—including his mom Rosemary Lora, dad Gabriel Villamil and aunt Fulvia Lora, a committee member with the Cristian Rivera Foundation—as well as his friends and everyone who has had the pleasure to meet him. We at the Cristian Rivera Foundation are keeping Buji and his family in our thoughts and prayers on this difficult anniversary.

Despite the sadness we feel remembering Cristian, Buji and all the young lives DIPG has taken from us, 2012 is shaping up to be a big year for us and the entire DIPG community. Beginning this month, the Cristian Rivera Foundation officially supports the research of Dr. Oren Becher, a pediatric neuro-oncologist who has dedicated his career to improving therapies for children with brain tumors with a particular focus on identifying effective therapies for children with DIPG.

Since setting up an independent study lab at Duke University in 2010, Dr. Becher’s six-person lab has sought to solve the mysteries behind the cause, make up and cure of DIPG tumors using genetic mouse models of cancer. The lab currently generates 10-15 DIPGs per month in their mouse colony and uses the tumors to both study the biology of DIPG and to evaluate the efficacy of new cancer drugs. Through this research, Dr. Becher says he and his team are now starting to understand all of the genetic changes that DIPGs harbor, thanks in part to tumor tissue from Cristian Rivera that was donated after he passed away.

“We have analyzed all the genes in Cristian’s tumor and we learned that Cristian’s tumor had the most common genetic driver that is known to drive the formation of DIPG. Approximately 30 percent of DIPGs have this common genetic driver,” said Dr. Becher. “Coincidentally, I used the same genetic driver to develop a DIPG mouse model. So in my opinion, if we can identify drug combinations that can cure our genetic DIPG mouse model, these drug combinations will also be active in children with DIPG whose tumors harbor this common genetic driver.”

We’re proud that Cristian’s tumor tissue has been such an instrumental part of Dr. Becher’s research and we look forward to supporting and funding his work. As you know, we already support the work of Dr. Mark Souweidane and this month, he finally begins his pioneering clinical trial aimed at finding a cure for DIPG by using convection-enhanced delivery (CED) to administer radio immunotherapy to children with DIPG. Dr. Souweidane officially received FDA approval for the trial on Thursday, December 29, 2011, which is expected to begin in the last week of January. Twelve patients will be selected.

We are so excited that Dr. Souweidane’s path to a cure has finally gotten the green light, so imagine our reaction when we also heard that Dr. Souweidane performed his first DIPG biopsy on a young girl named Olivia Boccuzzi on Friday, January 6. Olivia was only 22 months old when she was diagnosed with DIPG on September 21 of last year. After six weeks of radiation and medication, an MRI showed that Olivia’s tumor exhibited a significant amount of necrosis, explained Olivia’s mother Enza. Olivia’s parents consulted with Dr. Souweidane, who agreed to perform the biopsy and, after one night in the ICU, we’re proud to report that Olivia returned home and the operation was a success.

All these huge steps toward a cure empower is to continue working tirelessly in Cristian’s name to find a cure for the disease that took his young life. Please help us get even closer to our goal of curing DIPG once and for all by visiting http://cristianriverafoundation.org/donation.html and making a tax-deductible donation via Paypal. You can also mail a check to the Cristian Rivera Foundation at 40 West 37th Street, Suite 402, New York, NY 10018. Every donation big or small brings us closer to curing DIPG and we appreciate all of the amazing support we have received so far.

One Cristian Rivera Foundation committee member in particular has shown amazing strength and courage in the fight against DIPG and Cristian Rivera Foundation founder John “Gungie” Rivera wanted to take a moment to recognize her for her dedication to our cause.

As founder of the Cristian Rivera Foundation, I would like to take a moment to express my sincerest gratitude to one of our most active and dedicated committee members, Solange Osorio. Solange has been a committee member basically since the foundation began and even though she has never had or lost a child to DIPG, she has shown more devotion to finding a cure and comforting and helping DIPG families than anyone I know. She selflessly dedicates time from her busy schedule every week and has even put her education second to the needs of the DIPG community. She volunteers at every Cristian Rivera Foundation event, attends many other DIPG events, and has provided the décor for every Cristian Rivera Foundation Gala, even going so far as to skip shopping for her outfit to the Third Gala just to make sure that everything was running smoothly. Solange has shown amazing compassion towards DIPG families and has been the communicator between the foundation and the DIPG community. I communicate with the doctors and certain foundations, and she deals with everyone else. She always remembers to send a Christmas card to a DIPG family, an email to find out how a sick child is doing, a message of encouragement in tough times, an acknowledgment of DIPG Angel anniversaries and everything in between. She is well-known within the DIPG community for the kindheartedness and care she puts into every interaction. Thank you for all of your hard work and dedication. Thank you for being my friend and standing by me in my quest to rid the world of DIPG. For this and so much more, I Love Her.

Everyone at the Cristian Rivera Foundation is grateful for Solange’s contribution, along with the donations and support we receive from every member of the Cristian Rivera Foundation family. Remember to visit www.cristianriverafoundation.org, which we’ve recently revamped with new tabs with informative DIPG content such as ongoing clinical trials, helpful information for understanding DIPG biopsies, and the latest news from the Cristian Rivera Foundation and the entire DIPG community. You can also make a tax-deductible donation on our website, or purchase Cristian Rivera Foundation merchandise, like official foundation wristbands, t-shirts, wood beaded bracelets and necklaces with your choice of bronze or silver charm. The official Cristian Rivera Foundation Merchandise Catalog is available for you to download and show your friends, family and colleagues all of the exciting products we offer in support of our cause. Also make sure to follow us on Twitter @tweetcrf and on Facebook at www.cristianriverafoundation.org to get the latest updates on all our upcoming events.

Next month, the Cristian Rivera Foundation will host a special charity performance of DC-7, The Roberto Clemente Story at the Puerto Rican Traveling Theatre in Times Square. DC-7 is a bilingual musical that tells the amazing story of Hall of Famer Roberto Clemente, one of the most beloved figures in the history of Major League Baseball. The Society of the Educational Arts (SEA), under the direction of Manuel Moran, has partnered with Cristian Rivera Foundation founder John “Gungie” Rivera and Cristian Rivera Foundation Committee Members Ralph Mercado III and Miriam Colon to bring this amazing production to New York for a limited run.

DC-7 was recently nominated for 7 ATI Awards (Independent Theater Awards), including Best Musical. The show has already won 6 ACE Awards from the Latin Critics Association, including Best Musical, Best Director and Best Book for writer-director Luis Caballero, Best Actor for Modesto Lacen, Best Actress for Lorraine Velez and Best Supporting Actress for Xiomara Rodríguez.

Visit www.teatrosea.org to find out more about the show and keep checking our website, Facebook and Twitter for the latest details on dates, times and ticket prices for our special night at the theater. We look forward to seeing you there and we look forward to all of the great things ahead for us in 2012. Full Steam Ahead!

Sincerely,
“Cristian’s Mommy” Jenelle Asencio, John “Gungie” Rivera “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Foundation Committee: Aldo Marin, Alex Garcia, Andy Epstein, Anthony Mason, Camilo, Carlos Colon, Carlos Keyes, Dr. Bear Walker, Dr. Ben Velazquez, Carlos R. Colon, Dolores Catania, Doug E. Fresh, Edward Caban, Elis Pacheco, Fernando Ferrer, Fulvia Lora, Funkmaster Flex, Hamlet Peralta, Jaison Newring, Jay Hernandez, Jeff Lavino, Jerry Chaparro, Jerry Salerno, J.I. Starr, Jim Jones, John “Jelly Bean” Benitez, Johnny Nuñez, Jose Alberto “El Canario,” Joseph Mbeh, Kamar De Los Reyes, Karen Cerna, Katie DeFlorio, Kenan Thompson, Khaliah Ali, Little Louie Vega, Luis Guzman, Manuel Alejandro Ruiz (Boy Wonder), Mark Rosner, Matthew “Mateo” Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Odalys Molina, Pablo Diaz, Ralph Mercado III, Ramon E. Javier, Ray Wong, Ricardo Cardona, Rickie Ricardo, Robert Vazquez, Ruben Sierra, Solange Osorio, Steve Cox, Tedsmooth, Tony Ferrara, Victor Martinez, Vito Bruno, William Padilla and William Pla.