Nearly 60 years ago, Neil Armstrong’s daughter was diagnosed with a rare, inoperable pediatric brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). She passed away less than a year later. To this day, treatment for DIPG remains virtually unchanged.
DIPG is an uncontained, malignant tumor that occurs in the brainstem, making removal impossible. Symptoms of DIPG include problems with eye movement, motor skills and hearing, along with facial weakness and drooping. Currently, standard radiation therapy is used to calm the symptoms, but the tumor will inevitably return. The survival rate is 0 percent, with children only able to live a year or two past the diagnosis.
We recognize that this prognosis sounds bleak. However, there are experts actively seeking a solution for these kids. Tissue samples are getting easier to obtain, and scientific breakthroughs are happening faster than ever, giving us hope that new treatments are getting closer every day.
DIPG affects between 200 and 400 children per year worldwide, and there have recently been three new cases in the Kansas City area. We need your help funding research and supporting these families so we can get control of this fatal disease once and for all.
For more information, please visit the DIPG Registry.