Prominent patients
Karen Armstrong (1959–1962), daughter of American astronaut Neil Armstrong and his first wife, Janet Elizabeth Shearon. Elena Desserich (2000–2007), daughter of Brooke and Keith Desserich. After her passing her parents founded The Cure Starts Now Foundation, the first international DIPG/DMG charity that today has funded over $12 million in research at 114 hospitals. Her story was also chronicled in Notes Left Behind and became a New York Times bestselling book on November 12, 2009. Gabriella Miller (2003–2013), American childhood cancer awareness advocate who raised thousands of dollars for childhood cancer charities and founded Smashing Walnuts Foundation. The Gabriella Miller Kids First Research Act, signed into US law in 2014, was named after her. Lauren Hill (1995–2015), American freshman basketball player of Mount St. Joseph University, Cincinnati. To fulfil her wish of playing basketball for the college team for one game, the 2014 Hiram vs. Mount St. Joseph womens basketball game was scheduled 13 days earlier than the initially planned date and carried a brain cancer awareness message. Her efforts resulted in over $2.2 million raised for DIPG research through The Cure Starts Now Foundation. Nathaniel Kayne Finley (1999-2017), born to Curtis Lee, a former member of the U.S. Armed Forces and Kirsten Darlene Finley. Finley was a member of USA Swimming through Northern Kentucky Clippers and Daytona Beach Speed swimming clubs. Despite being diagnosed with DIPG in late 2016, Finley choose to attend LSU as a freshman in fall 2017, majoring in the College of Agriculture, Animal Sciences with aspirations of becoming a veterinarian.
A diffuse intrinsic pontine glioma (DIPG) is a tumour located in the pons (middle) of the brain stem. Glioma is a general name for any tumour that arises from the supportive tissue called glia, which help keep the neurons in place and functioning well. DIPG is a brainstem glioma. The brain stem is the bottommost portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumours occur in the pons and are diffusely infiltrating (they grow amidst the nerves), and therefore cannot be surgically removed. The brain stem contains all of the incoming neurons within the spinal cord, as well as important structures involved in eye movements and in face and throat muscle control and sensation. Diagnosis
Like most brainstem tumors, diagnosing diffuse intrinsic pontine glioma usually involves non-invasive brain imaging like MRI, in addition to neurologic physical exam. Biopsies and other procedures are very uncommon. Similar to DIPG, diffuse midline gliomas (DMG) often fall into similar categories for both diagnosis and treatment as DIPG and are often categorized together. More recently, biopsies are performed so that the best option for clinical trials can be chosen.In studies resulting from the DIPG/DMG Registry and in connection with the DIPG/DMG Collaborative, statistics reveal that approximately 150–300 patients are diagnosed with DIPG in the USA per year, the median age of patients with DIPG is approximately 6–7 years old and the male/female ratio of DIPG patients is 1:1.