Meet Michael Mosier

Michael was active and energetic with a thirst for learning. He had a huge smile that would light up a room. He was equally enjoyed baseball and art projects, playing in the mud and doing puzzles, wrestling and board games. Michael loved playing with his little sister, Lila. He had an incredible memory, and if you doubted him, you would usually be wrong. From birth, he loved the color yellow.

A week after Michael’s 6th birthday and 1st day of kindergarten, Michael suddenly began complaining of double vision, and his right eye stopped moving and blinking normally. An MRI on September 4, 2014 brought the tragic news that Michael had DIPG. “Terminal upon diagnosis,” “Zero survival,” “No effective treatments,” and “No cure.”

The neuro-oncology team at Children’s National Medical Center in Washington, DC, led Michael’s treatment. Michael mustered the energy to go to school each morning before going to NIH each afternoon to complete 30 radiation treatments. He concurrently took an experimental chemotherapy drug meant to enhance the effects of the radiation.

Michael’s symptoms worsened quickly. Just weeks after his diagnosis, Michael began using a wheelchair, lost the ability to use his left (dominant) hand, had difficulty speaking, and would often get nauseated and vomit. The steroids that Michael took to counteract the inflammation caused rapid and significant weight gain and sleeplessness.

During Michael’s illness, he created a “to do list” every day that had to be finished before he would go to sleep. Michael rarely complained during an unbelievably difficult 8 1⁄2 months. Even in his last days, when he could no longer eat, speak, or move, Michael wanted his teacher to come to the house to go over his school lessons.

Michael passed away on May 17, 2015, after a heroic battle, and he is remembered and missed greatly each and every day. Michael’s brain was donated to medical research, with hopes that it will contribute to medical breakthroughs and progress.

May 17th is now recognized as DIPG Awareness Day. In 2016, the Mosiers worked with then-Governor Larry Hogan to establish Maryland’s first DIPG Awareness Day, in honor of the first anniversary of 6-year-old Michael Mosier’s passing. In the years that followed, the effort to establish a universal DIPG Awareness Day was spearheaded by the Mosier family on a state level, with other advocates working in parallel on the federal level. As a result of the combined efforts of many families who championed the adoption in their own states, more than 30 states and the U.S. Senate have recognized May 17 as DIPG Awareness Day.

Following Michael’s passing, his parents Mark and Jenny Mosier created Michael Mosier Defeat DIPG Foundation in his honor. The Foundation focused on finding a cure for DIPG through funding of innovative research. Inspired by Michael’s perseverance, courage and determination, the Mosiers worked to complete the final item on Michael’s checklist: Defeat DIPG.

In early 2021, the Mosiers merged their foundation with The ChadTough Foundation, a nonprofit led by their friends Jason and Tammi Carr in memory of their son Chad, to create a unified organization: ChadTough Defeat DIPG Foundation. ChadTough Defeat DIPG Foundation has funded $30 million in research, to 75 researchers, across 39 institutions. In addition, ChadTough Defeat DIPG launched the My DIPG Navigator program in May 2022 to provide free one-on-one nurse guidance for families facing a DIPG diagnosis, and they have served more than 325 families so far.