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Experts to discuss latest in treatments, trials and support for rare disease

Children’s Neuroblastoma Cancer Foundation Parent Medical Conference Returns for 10th Year

Experts to discuss latest in treatments, trials and support for rare disease

The Children’s Neuroblastoma Cancer Foundation (CNCF) invites parents, caregivers, advocates and journalists to hear leading neuroblastomaresearchers talk about the latest in treatments and clinical trials at its 10th Parent Education and Medical Conference June 28-30 at the Westin Lombard Yorktown Center.


Featured speakers also will include researchers, therapists and survivors from around the country, offering support, insight and community to families confronting this devastating disease.


Each year, about 700 children are diagnosed with neuroblastoma, which primarily strikes infants and toddlers. The survival rate is 40 percent for high-risk disease.


“After my son, Nicholas, was diagnosed with neuroblastoma at the age of 6, a hospital employee handed me a sheet of paper about pediatric cancer with little mention ofneuroblastoma, and that was it,” said CNCF President Pat Tallungan. “Neuroblastoma has a higher incidence rate among infants than leukemia, but many people have never heard of it.


A year after Nicholas died at age 10, Tallungan helped found CNCF as a resource forneuroblastoma families around the world. Two families from Australia and one from London will be among the conference attendants, Tallungan said.


This year’s conference speakers include Dr. Susan L. Cohn of the University of Chicago’s Comer Children’s Hospital on Friday morning, explaining Phase I, II and III clinical trials. Her colleague Dr. Samuel L. Volchenboum will speak Saturday morning about the development of an International Neuroblastoma Risk Group (INRG) Database, to facilitate research and improve outcomes for neuroblastoma patients.


Dr. Rupert Handgretinger, a former Memphis transplant surgeon and oncologist/hematologist, will speak on haplo-identical stem cell transplantation on Friday morning. Dr. Chrystal Louis of Texas Children’s Cancer Center will speak Friday afternoon on vaccine and t-cell studies.


Hillary Van Horn Gatlin, a Sacramento psychologist who has done research on post-traumaticstress speaks Saturday morning on emotional strains of childhood cancer. Darcie Sims, a licensed psychotherapist from Grief Inc., will also be on hand Saturday throughout the day.


Survivors will share their stories on Friday and Saturday afternoon.