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.”