Greetings from the Cristian Rivera Foundation.There’s an excitement in the air at the Cristian Rivera Foundation following the informative and enlightening symposium and gala held by The Cure Starts Now in Cincinnati, Ohio. John “Gungie” Rivera attended the three-day event and got the chance to meet DIPG parents and doctors from all over the world.
“I got to meet so many other DIPG parents whose stories I’d read about on the Yahoo and Google DIPG groups. I knew about their journeys, from the day their child was diagnosed to the day they earned their wings, so it was almost surreal to meet them in person,” John said in his journal. “They all knew me though. They told me how much they loved the foundation’s website and the billboard. I realized that the Cristian Rivera Foundation has made an impression on the DIPG community because they’ve followed the work we’ve done and they know everything about it. This fuels me and pushes me to work harder because I know there are so many parents relying on me to make a difference.”
The most exciting meeting of the trip had to be at the meet-and-greet, where DIPG foundations and doctors got together at a restaurant. Dr. Oren Becher of Duke University had often seen Cristian around the clinic when he worked at Memorial Sloan Kettering and recognized John from the resemblance they share. He informed John that the tumor tissue donated after Cristian’s death has yielded great results.
Maybe only 100 samples worldwide have been usable, Dr. Becher said, and only 10 have been studied in as much detail as Cristian’s has. Dr. Becher told the Cristian Rivera Foundation that he and his team have sequenced every gene in Cristian’s tumor tissue and they are now studying them to try and isolate the ones that cause the tumor to grow. “We used all the technological tools we have now at our disposal and we know as much we can about Cristian’s tumor,” said Dr. Becher. “Now we are working to interpret the date we’ve collected.”
That data will one day be shared with the world, as DIPG doctors from the U.S. and Europe agreed at the symposium to work together and share their knowledge so that they can maximize their research and no efforts are duplicated. Between the exciting breakthroughs shared, the relationships forged and the immensely successful gala—where the Cristian Rivera Foundation donated auction items like baseballs autographed by Nolan Ryan and Rod Carew; a photo signed by Yogi Berra; basketballs signed by Anthony Mason and Luol Deng; a jersey signed by soccer player Jay Hernandez and a ball signed by his entire team, the San Jose Earthquakes; restaurant visits for two New York City trips and a hotel stay for one of them—the event was very successful and John is glad he had the chance to go.
The occasion also helped to connect him with a local couple whose son died of DIPG in January 2010. Fulvia Gonzalez contacted John about her nephew Buji’s parents, Rosemary Lora and Gabriel Villamil, who were taking their son’s death quite hard. They had all crossed paths at the Second Annual Cristian Rivera Foundation Gala, but after the symposium John “felt in my heart I wanted to call them. I wanted to embrace them and when we met for dinner, we really bonded,” he said.” They came to really open up to me and we exchanged stories about our children over dinner. We cried and it was a very emotional night, but we all had a great time.”
To read more about John’s experiences with Rosemary Lora and Gabriel Villamil, as well as at the symposium, visit www.cristianriverafoundation.org and click on the Journal tab.
While you are there, take a moment to sign up for the 4th Annual Walk for Health Walk-a-Thon PONTE-EN-FORMA. Organizers the Diversity Foundation and The National Puerto Rican Parade have chosen pediatric brain stem tumors as one of its areas of focus, with the proceeds benefiting The Cristian Rivera Foundation.
Interested participants can register for the walk-a-thon, or make a donation, through The Cristian Rivera Foundation at www.cristianriverafoundation.org/events.html. There are a series of walk-a-thon packages available that include signature foundation wristbands and t-shirts, as well as gift certificates to Hudson River Café and Havana Café.
And remember, you don’t have to walk to donate. Any amount you can give, big or small, will help us fund the important research that will one day cure Pontine Glioma forever. Visit www.cristianriverafoundation.org to make a donation or a signature Cristian Rivera Foundation wristband, t-shirt or “On the Right Track” pendant.
To keep up with the latest news on the Cristian Rivera Foundation, visit our Facebook page www.facebook.com/pages/Cristian-Rivera-Foundation/176323675727785, join our official Facebook Group www.facebook.com/home.php?sk=group_143143255734418, and follow us on Twitter @tweetcrf.
Thank you for your continued support of the Cristian Rivera Foundation. Full Steam Ahead.
Sincerely,
John “Gungie” Rivera, “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Foundation Committee : Alex Garcia, Andy Epstein, Anthony Mason, Aurora Flores, Boy Wonder, David Maldonado, DJ Camilo, Dr. Ben Velazquez, Dr. Mary Saleeby, Dr. Bear Walker, Edward Caban, Elis Pacheco, Fernando Ferrer, Funkmaster Flex, Hamlet Peralta, James R. Cotto, Jay Hernandez, Jeff & Valerie Lavino, Jim Jones, Jimmy Rodriguez, J.I. Starr, John “Jellybean” Benitez, Johnny Nuñez, Jose Alberto “El Canario,” Joseph Mbeh, Kamar De Los Reyes, Khaliah Ali, Little Louie Vega, Lucho Concepcion, Luis Guzman, Marianela Gonzalez, Marissa Gonzalez, Mark Rosner, Matthew “Mateo” Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Pablo Diaz, Ralph Mercado III, Ray Wong, Ricardo Cardona, Robert Vazquez, Solange Osorio, Stephanie Carrera, Steve Cox, Tedsmooth, Tony Ferrara, Vic Latino, Victor Martinez and William Pla.
