Families fighting deadly childhood cancer seek answers at medical conference
Children’s Neuroblastoma Cancer Foundation connects them to doctors,
clinical trials and each other
LOMBARD, Illinois, June 24, 2015 – Celebrities like Taylor Swift and Miranda Lambert have raised awareness of a deadly childhood cancer called neuroblastoma
at concerts and through fan-based awards shows. But for families attending the Children’s Neuroblastoma Cancer Foundation’s annual parent medical conference, CNCF has become their most valuable resource of information about new medications, clinical trials and advanced treatment therapies to prevent relapse.
This Friday and Saturday, CNCF will bring together children and families for its 12th
annual Parent Education and Medical Symposium at the Westin Lombard Yorktown Center, 70 Yorktown Center. Participants will hear from the leading neuroblastoma researchers and connect with a network of neuroblastoma families that spans the globe.
is a pediatric cancer with an estimated 800 new cases diagnosed annually. The average age of diagnosis is 2, and most victims are in advanced stages of the disease. Neuroblastoma originates from immature nerve cells and manifests as solid tumors most commonly in the adrenal glands above the kidney, and in nerve tissues in the neck, chest and abdomen. It has a high rate of relapse, and the survival rate for high-risk children is 40 percent. Some survivors have fought the disease and negative effects of treatment into adulthood.
Because the disease is lesser known than cancers such as leukemia or lymphoma, families struggle to find information and doctors specializing in the latest treatment therapies. CNCF was founded in 2000 to bridge that gap. The nonprofit has donated more than $2 million to neuroblastoma research and clinical trials, including $65,000 toward development of an international neuroblastoma database by a leading researcher at the University of Chicago. CNCF provides meals and assistance with travel and lodging to families who qualify.
Ryan Diem, a former Glenbard North High School football star turned NFL pro (Super Bowl champion Indianapolis Colts, 2007) will stop by Friday, June 26 to talk with parents and visit with patients and surviving children in the play room on site. Families will also access counseling on how to cope with the diagnosis, and there will be special sessions for angel parents Friday and Saturday from 9 a.m. to 3 p.m.
This year’s speakers include personal accounts from several neuroblastoma survivors and the following medical specialists:
Dr. Darrell Yamashiro, Department of Pathology and Cell biology, Columbia University; “The Basics of Immunotherapy Drugs”
Dr. Giselle Sholler, from Helen DeVos Children’s Hospital and the driving force behind the first genomic-based personalized medicine pediatric cancer trial in neuroblastoma with an update on clinical trials;
Dr. Keri Streby, Nationwide Children’s Hospital, “Understanding Clinical Trials”;
Dr. Danielle Friedman, Memorial Sloan Kettering Cancer Center, to discuss late effects;
Dr. Navin Pinto, neuroblastoma researcher at University of Chicago’s Comer Children’s Hospital, to give an overview of neuroblastoma staging;
Dr. Yael Mosse, Children’s Hospital of Philadelphia, to speak on adult neuroblastoma and relapse;
Dr. John Maris, Children’s Hospital of Philadelphia, “What is or isn’t personalized medicine?”
Dr. Araz Marchelian, Children’s Hospital Los Angeles, NANT trials;
Dr. Andras Heczey, Immunotherapy studies, Texas Children’s Hospital; and
Dr. Brian Kushner, Memorial Sloan Kettering Cancer Center, to provide updates on current research and clinical trials.
CNCF’s parent medical conference is supported and sponsored by Ryan Diem’s Allie & Friends Golf Classic; Carousel of Possible Dreams; United Therapeutics; and the NICK Foundation of Northwest Indiana.