Wednesday, May 2, 2012

Innovative Clinical Trial Aimed at Curing Rare Pediatric Brain Tumor Treats First Patient



May 1, 2012—New York, NY—Doctors at Memorial Sloan Kettering Cancer Center and Weill Cornell Medical Center took a major step towards finding a cure for inoperable pediatric brain stem tumor Diffuse Intrinsic Pontine Glioma (DIPG) on Tuesday, May 1, 2012 as work began on the first patient in a pioneering clinical trial spearheaded by Dr. Mark Souweidane. Through the innovative use of convection-enhanced delivery (CED), Dr. Souweidane’s clinical trials will be the first of its kind to administer radio immunotherapy to children with an otherwise incurable tumor.
Denise Pflaumer Downing is the patient’s mother and a Facebook follower of The Cristian Rivera Foundation. She expressed her gratitude for the efforts of the Foundation when she sent this message: “I am sitting at MSKCC in NYC. Right now, my 4 year old daughter is in surgery with Dr Mark Souweidane and his team as they perform the first surgery in a new clinical trial on my daughter. I am so thankful to your foundation for all you have done to support this research and make this trial possible. We must find a cure for DIPG, not only for my child but for all children. Thank you Cristian Rivera Foundation!”
Another sentiment soon followed, this time from Dr. Souwedaine himself.“Today, the first day of Brain Tumor Awareness month, we treated our first patient on our trial using local delivery of a radioimmunotherpeutic agent. The beautiful 4-year-old girl did fantastic and tolerated her surgery like a true champion. Today marks a day of hope for her family, an entry into a new treatment approach for these children, and the culmination of over 12 years of translational research.”
Through this groundbreaking work, Dr. Souweidane and his team aim to ultimately save the lives of approximately 200-300 children who are diagnosed with DIPG each year in the United States. DIPG is typically found in children between the ages of 1 and 9, who are given a bleak prognosis after the tumor is discovered. Median survival is less than one year and the two-year survival rate is less than 20 percent. Currently, there are no recorded survivors and all children diagnosed with the disease typically pass away within 3-18 months.
Helping make these landmark trials possible were donations from top cancer charities with the common goal of making DIPG a thing of the past, including New York City-based  not-for-profit 501(c)(3) The Cristian Rivera Foundation, which, to date, has donated approximately $150,000 to Dr. Souweidane’s promising research. John “Gungie” Rivera started the foundation in 2009, months after his 6-year-old son Cristian lost a more than two-year battle with the disease. The Cristian Rivera Foundation is committed to supporting DIPG families and finding a cure for DIPG through education and program funding.
“When my son Cristian was first diagnosed with DIPG, it seemed very unlikely, in fact almost impossible, that a cure would be found in my lifetime,” said Rivera. “Thanks to the amazing courage and interminable spirit of Dr. Souweidane and everyone at the Weill Cornell Pediatric Brain and Spine Center, I firmly believe a cure is within our grasp. Dr. Souweidane gives the DIPG community the hope they so desperately need and I am proud to give him the full support of the Cristian Rivera Foundation as he works toward a cure.”

Monthly Newsletter April 2012


Welcome to the Cristian Rivera Foundation April Newsletter

Last month brought great things and we’re sure this one will too. Thursday March 22nd was the charity performance of DC-7: The Roberto Clemente Story at the Puerto Rican Traveling Theatre. Guests were greeted by a red carpet and a host of photographers before entering the cocktail reception with wine and hors d’oeuvres provided by Babalu Restaurant in the Bronx and its Executive Chef, Cristian Rivera Foundation Committee Member Alex Garcia. Roberto Clemente Jr., the newest Cristian Rivera Foundation committee member, was happy to meet and speak with his fellow committee members, guests and, of course, Dr. Mark Souwedaine. After posing for photos and speaking with a wide range of people, Dr. Souwedaine took the stage and thanked everyone for contributing to his research and announced that his newly-approved clinical trial will be under way and that he should be operating on the first patient in the next month. When the applause for this wonderful news subsided, he was handed a $10,000 check raised by tickets and donations leading up to the event.


The Cristian Rivera Foundation would like to give a special thank you to everyone who made a donation or attended this event, especially the Cristian Rivera Foundation committee members who joined us that night, including founder of the Puerto Rican Traveling Theatre Miriam Colon, businessman Elis Pacheco, founder and president of Metropolitan Recording Corporation Jerry Salerno, DJ Tedsmooth, music producer Aldo Marin, Red Entertainment Group founder Carlos Keyes, businessman Jeff Lavino, David Letterman Show staffer Karen Cerna, real estate agent Fulvia Lora, Bronx Base Builders founder William Padilla, Information Technology manager Steve Cox, X-Interactive Media founder Carlos Colon, philanthropist Dolores Catania, and concert impresario Ralph Mercado III, a member of the Cristian Rivera Foundation Board of Directors. Danielle Staub of The Real Houswives of New Jersey even stopped by to greet everyone and smile for pictures. All of your generosity is greatly appreciated. Also, a host of photos were taken before the play began and a few in between. You can see the photos at http://www.cristianriverafoundation.org/crfdc7/index.html.

While you’re there, you can view the latest news on The Cristian Rivera Foundation and the DIPG community. We also feature tributes to DIPG angels on their birthdays and the anniversary of the day they earned their wings. If you’d like to share your angel’s story, just contact us with info and photos or a personal website, and we will be happy to include them on our page.

We also highlight these posts on our Facebook http://www.facebook.com/cristianriverafoundation and Twitter https://twitter.com/#!/TweetCRF pages, where we are connected to DIPG families all over the world. Weill Cornell Medical Center also has a Facebook page http://www.facebook.com/WeillCornellPediatricBrainandSpine?ref=ts just for the Brain and Spine Center where you can follow Dr. Souwedaine’s progress as he works to cure DIPG.

"Like" us on Facebook to stay up-to-date on upcoming events we have planned that are sure to be sweet. We've got an event coming up at the Zylo restaurant in Hoboken's W Hotel in June organized by Cristian Rivera Foundation committee member Andy Epstein to raise funds for The Cristian Rivera Foundation. It is great to see committee members coming together to do their part to make the Cristian Rivera Foundation the amazing organization that it is. Be sure to follow us on Facebook and Twitter and check our website for updates on other exciting events to come!

As we ready ourselves for Brain Tumor Awareness Month in May, we’d like to take a moment to remind everyone to wear a gray ribbon to raise awareness during the month. This is a tribute to all of the individuals suffering from brain tumors of all types, including DIPG, as well as their families. Don’t forget that wristbands, wooden beaded bracelets and t-shirts are all available online at http://www.cristianriverafoundation.org/shop.html and proceeds go entirely to The Cristian Rivera Foundation which, in turn go to Dr. Souwedaine. Since DIPG is such a rare condition, funding for research has been especially hard to achieve, but we won’t stop until we’ve cured DIPG.


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, 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, Roberto Clemente Jr., Ruben Sierra, Solange Osorio, Steve Cox, Tedsmooth, Tony Ferrara, Victor Martinez, Vito Bruno, William Padilla and William Pla.