The Cristian Rivera Foundation Monthly Newsletter July 2010

Monthly Newsletter July 2010
First Anniversary Issue


Greetings from the Cristian Rivera Foundation.

July marks one year since John “Gungie” Rivera started the Cristian Rivera Foundation. Six months after Cristian Rivera lost his battle with Pontine Glioma, his father dedicated himself to finding a cure and saving future children and their families from the heartbreak associated with this deadly disease.

It’s been an eventful first year, to say the least. Who can forget the Foundation’s first fundraiser gala at New York City indoor/outdoor venue Eden? The site had special significance since it’s where Cristian had his fifth birthday party—the last birthday he was really able to celebrate before Pontine Glioma fully took hold of him. Hosted by comedian Ruperto Vanderpool and emceed by J.I. Starr of La Mega 97.9 FM, the night featured dinner catered by celebrity chefs Ricardo Cardona and Alex Garcia, as well as entertainment from Raul Acosta of Oro Solido and a special speech by former New York City mayoral candidate Bill Thompson.

Photos and videos of the event—which featured such esteemed guests as actor Luis Guzman, actress Miriam Colon, filmmaker Franc Reyes, international Salsa star Jose Alberto “El Canario,” Dina Manzo of Real Housewives of New Jersey and rapper Jim Jones—is available on cristianriverafoundation.org. If you weren’t there to also take part in the festivities, don’t worry. A second event is scheduled for later this year. Keep checking cristianriverafoundation.org for all the details.

Over the past year, the Cristian Rivera Foundation has amassed an impressive Committee that continues to grow month by month. This year alone, we’ve added Luis Guzman, Alex Garcia, Miriam Colon and Mohammad Ali’s daughter, Khalia Ali. Our Committee Members are an essential part of the Foundation’s mission, helping get the word out by wearing Foundation wristbands during public appearances, donating goods and services and selling wristbands as part of our successful Wristband Project.

Another highlight of the Foundation’s first year was the billboard campaign that took place in May on the West Side Highway. “This billboard is something I dreamed of doing since the Foundation started and now that it’s up, people are responding,” John said at the time. “I’ve gotten such positive feedback from friends, family and even strangers. What that tells me is what I set out to do—to raise awareness—is working. And that brings me so much joy.”

That recognition and impact has helped the Cristian Rivera Foundation become a well-respected member of the DIPG community, with established foundations reaching out to one as new as ours. John attended the 8th Annual Dream and Promise Awards Benefit for the Children’s Brain Tumor Foundation, as well as the Fifth Annual Fundraising Event put on by Voices Against Brain Cancer, a foundation started by John’s friend Mario Lichtenstein. At both events, John was struck by the strength of resolve both on the part of the foundations and the parents dealing with Pontine Glioma. “It made me very emotional to hear the parents speak whose children had passed away. So many memories come flooding back after talking with parents who went through the same thing I did,” John said. “I know how difficult it is to keep on living after such a great loss. It takes courage to continue fighting this battle after some would say we’ve already lost.”

As we celebrate our first birthday, we look forward to continuing the fight and we pay tribute to the children who, like Cristian, were not able to survive. John was at the hospital when we lost Cristian’s friend Valeria last November, helping her parents who had become “like family” to him. And just this past month, news came that Danielle Rosario died on Father’s Day. John had come to know her father Larry through a friend from the DIPG community named Bee Farina, whose daughter Meghan also died from Pontine Glioma. John and Larry would talk about the different types of treatment, and they came to be friends by the time Danielle had passed away.

There are 300 new cases of Pontine Glioma detected each year, so more children will meet the same fate as Valeria, Danielle and Cristian if we don’t do something to help. Go to the “Shop” tab at cristianriverafoundation.org to buy a Foundation wristband or one of our new Foundation t-shirts. Once you’ve bought one, wear it proudly and explain to your friends and family just why our cause is so important. You can also sell wristbands to your friends and family on behalf of the Foundation as part of our Wristband Project. All of the money we raise goes towards promising research that will one day result in a cure.
Thank you for your continued support throughout our first year and for all of the hard work that we will do together in the years to come.

Sincerely,

John “Gungie” Rivera, “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Committee: Alex Garcia, Andy Epstein, Anthony Mason, 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, 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, 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.

Latin Kitchen Holds Successful Mini-Fundraiser for the Cristian Rivera Foundation

                Bronx restaurant Latin Kitchen was the site of the Cristian Rivera Foundation’s most recent mini-fundraiser event on July 29. The restaurant, located at 3841 East Tremont Avenue, becomes a lounge every Thursday night and on this particular Thursday, everyone who came after 10pm paid a $10 donation and received one of the Cristian Rivera Foundation’s signature blue wristbands. Latin Kitchen’s DJ Lucho Concepcion and Robert Vasquez organized the event, which featured music from resident DJ Victor Vargas, as well as Cristian Rivera Foundation Committee Members DJ Tedsmooth and Ralph Mercado, aka DJ Wreck. Committee Members Kenya Bradix, Solange Osorio and Steve Cox were all there to support the cause. Lots of John “Gungie” Rivera’s friends, as well as friends of the Cristian Rivera Foundation came out and everyone had a great time.

Cristian Rivera Foundation Has Strong Presence at All-Star Concert

July 17 was a star-studded day at The Country Fair Entertainment Park in Medford, NY. That was the site of Mega Jam 2010, the all-day event offering carnival rides, food, family fun and music. Party 105.3 FM put on the event, which was hosted by Miranda Cosgrove, star of Nickelodeon's iCarly, and Kiowa Gordon, best known as Embry Call in the Twilight series. JWoWW from MTV's Jersey Shore was seen there with some of her castmates and musicians Lucas Prata, Natasha Bedingfield, Shaggy, Kelis, Jay Sean and many others could be spotted rocking the stage.

The most exciting presence at Mega Jam 2010, however, had to be the Cristian Rivera Foundation. The event helped raise awareness about the Foundation, and many of the celebrities on hand stopped to take their picture in front of a Foundation-branded step and repeat. The Foundation gave out t-shirts and wristbands. Miranda Cosgrove wore a signature Foundation wristband. Party 105.3     on-air talent DJ Serg and Party 105.3 owner and Cristian Rivera Foundation   Committee Member Vic Latino not only wore the wristband, but a Foundation t-shirt too.

New Jersey Day Care Center Supports the Cristian Rivera Foundation

The Cristian Rivera Foundation continues to touch people’s hearts with its mission to cure inoperable pediatric brain stem tumor Pontine Glioma. Jeannie Perez, of Newark, NJ’s Family Affair Childcare, created a banner inviting families at her daycare center and in the community to support the Cristian Rivera Foundation. She even offered a period of free daycare to the family who sold the most Cristian Rivera Foundation wristbands. Her contest inspired others to get the word out and collectively, the families sold 50 wristbands. Having everyday people go to bat for the Cristian Rivera Foundation gives hope not only that its awareness campaign is working but also that a cure for Pontine Glioma is within reach.

The Cristian Rivera Foundation Monthly Newsletter June 2010

Monthly Newsletter June 2010



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.

It is through important research like this that we can one day realize our dream of a world without Pontine Glioma; a world where no one will have to lose a child, relative or friend like Cristian Rivera. Committee Member J.I. Starr offered his rememberances of Cristian:

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.

Cristian’s former babysitter, Virginia Rivera, also shared some of what she remembers most about her time with Cristian:

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.

As always, we invite you to share your memories of Cristian, opinion pieces and other submissions for use in future editions of this newsletter. The Cristian Rivera Foundation is accomplishing so much and we appreciate everything you have done and will do to make our Foundation a success. Full steam ahead!

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.

Actor Luis Guzman and Celebrity Chef Alex Garcia Join

The Cristian Rivera Foundation welcomed two new members to its Committee this month —actor Luis Guzman and Celebrity Chef Alex Garcia.
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.

Garcia is a Nuevo Latino chef who has appeared on the Food Network and written cookbooks like 2004’s 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.

Sex and the City Costume Designer Patricia Field Spotted Wearing

Patricia Field—the award-winning costume designer for Sex and the City, Ugly Betty and The Devil Wears Prada—held a fashion event this week at New York City’s Rooftop, located at 230 Fifth Avenue. The fashionable Ms. Field made the Cristian Rivera Foundation wristband an integral part of her ensemble. She’s pictured here with global singing star Anane and Cristian Rivera Foundation founder John “Gungie” Rivera. Field dressed Anane and her husband, celebrity DJ/producer and Cristian Rivera Foundation Committee Member Little Louie Vega, who DJ’d the event. The two of them also wore their Cristian Rivera Foundation wristbands all night long.