TAMPA – Earlier this week Beat Nb, a nonprofit whose mission is to drive neuroblastoma research, presented Beat Childhood Cancer with a check for $1 million dollars to further the consortium’s research initiatives. Beat Childhood Cancer, comprised of 47 research centers and children’s hospitals and headquartered at the Helen DeVos Children’s Hospital in Grand Rapids, Michigan, offers an international network of childhood cancer clinical trials with a focus on studies evaluating therapies for neuroblastoma and other solid-mass pediatric cancers.
Neuroblastoma is among the most common childhood tumors. The disease typically presents in children under five and is often not diagnosed until the primary tumor grows or spreads, leading to symptoms. As such the majority of neuroblastoma cases are aggressive (stage IV). Pat Lacey founded Beat Nb in response to his own experience fighting to save the life of his son Will, diagnosed with neuroblastoma at only seven months of age. Will, recently featured on a Today Show segment about his journey, is now 14 years old.
Beat Childhood Cancer trials are based on research from a collaborative group of investigators linked with laboratory programs developing novel therapies and technologies. The research is broadly focused on applications of precision medicine in order to develop targeted therapies to treat tumors based on genetic mutation. Beyond evaluating investigational precision medicine approaches for neuroblastoma, the group is also enrolling pediatric patients with other brain tumor types – including medulloblastoma and DIPG – into studies. Given that DIPG is until this day a terminal diagnosis, this is an area needing urgent attention.
The second focus to the research work of Beat Childhood Cancer is advancing therapies to prevent relapse of neuroblastoma. For several years the group has been evaluating the efficacy of a drug called DFMO to prevent relapse given the disease has a very high relapse rate. Until very recently, children that relapsed (nearly 35% within the first two years of treatment that included chemotherapy, surgery, radiation, stem cell therapy and/or immunotherapy) were deemed incurable.
Earlier this year Beat Childhood Cancer shared their research findings following nine years of trials with DFMO. The results were incredibly promising to say the least: for kids that took DFMO after getting into a first remission, 84% stayed in remission after two years and 97% were still alive after two years. At the four-year mark, 83% were still in remission and 96% were still alive.
“We are incredibly grateful to the Beat Nb team for the magnitude of the impact this will have for our patients and our research.As we expand in precision medicine and cancer stem cell research, this donation will allow the opening of new clinical trials this year,” according to Giselle Sholler, MD, Director of Pediatric Oncology Research at Helen DeVos Children's Hospital and Associate Professor Pediatrics at Michigan State University College of Human Medicine.
“It has been the mission of Beat Nb for nearly a decade to dramatically change outcomes for patients and families battling neuroblastoma. Our focus has been on funding research that measurably impacts neuroblastoma survival right now, andworking alongside Dr. Sholler to grow the Beat Childhood Cancer research consortium. It was an enormous honor to present Dr. Sholler with $1 million in funding to continue the work she and her team have done to literally save young lives with so much ahead of them,” shared Beat Nb’s Executive Director, Kyle Matthews.
Since 2010 Beat Nb has committed over $6 million to funding childhood cancer research. The foundation raises funds throughout the year through various philanthropic partners, including many families whose children have fought neuroblastoma. The charity is currently recruiting runners to join its Falmouth Road Race (Cape Cod, Massachusetts; August 18th) team. Last year more than 125 runners raised nearly $200,000 for Beat Nb.
About Beat Nb:
Beat Nb drives neuroblastoma cancer research and raises awareness, making a difference in kids’ survival today. We want to change the story for the next family by finding viable treatments and ultimately, a cure for neuroblastoma. For more information, please visit www.beatnb.org.
About Beat Childhood Cancer:
Beat Childhood Cancer is a national group of researchers and hospitals dedicated to finding a way to stop childhood cancers. Headquartered at Helen DeVos Children’s Hospital, the organization has grown to operate clinical trials in 40 hospitals and research centers across the world, and has launched 19 clinical trials over the past ten years. For more information, please visit https://beatcc.org.
