“While we wait,” declared Jace Ward from Wamego Kansas, to an NIH Symposium on genomic data sharing in September, 2019, “DIPG won’t wait! It won’t wait to take my mobility, my sight, my speech and my life…” With an extraordinary opportunity to shine a light on one of the darkest realms of pediatric oncology, Jace Ward, a young law student of 20 years, backed by his family takes on the burden of raising crucial awareness to the urgent, life/death struggle facing most all children diagnosed with diffuse intrinsic pontine glioma, the 2nd most common pediatric brain cancer.
Jace takes us through this journey with pediatric brain cancer, the leading disease-related cause of death in children in the USA, in real-time; his mother Lisa shares the reality with which families are invariably confronted, mostly in obscurity. The most promising treatments for DIPG are currently funded by parent-led foundations and for which participation is exceedingly difficult to qualify. We learn about Jace’s fight for ONC201 to be available to more children facing DIPG and midline glioma, and the campaign for a hearing with the Health Subcommittee of Energy and Commerce, to bring attention to this issue of urgency to our lawmakers in US Congress.