Inspired by Patients
Where it all Started
The DIPG DMG National Brain Tumor Board stems from the vision of Jace Ward, an amazing DMG DIPG advocate who died of the disease in 2021. When Jace’s tumor showed initial signs of progression fourteen months following diagnosis, he knew his mom Lisa could not stay up night after night reading Clinical Trials.gov for the answer as to which clinical trial he should enter next. Instead, through zoom, he decided to call his own national tumor board with clinicians leading trials across the country. He looked for clinicians using many different approaches ready to collaborate with others to help Jace decide what to do next for his care. It was the middle of the pandemic and doctors obliged.
In early 2021, from his hospital bed, Jace Ward and his mom, Lisa, convened a working group of some of the best DIPG DMG doctors around the country, together with a handful of foundations interested in changing the way a family is forced to navigate this disease. Lisa shared Jace’s vision of improving treatment and care for DIPG/DMG patients. Together they laid out their vision of a nurse navigation program, a national tumor board, and education for families just after diagnosis concerning the benefit of sharing their patient’s data through the entire journey. Jace believed in a robust centralized data repository with genomics, MRI imaging, clinical records, patient reported information, and therapy notes driven by artificial intelligence and machine learning to find trends between patients and to better inform researchers. This dedicated group, including tumor board members Dr. Sabine Mueller, Dr. Nick Vitanza, and Dr. Jason Fangusaro, met for several months eventually bringing forth a framework for this tumor board, the “Best Practices for Newly Diagnosed”, assisted in the planning for the MyDIPGNavigator.org and taking part in the first BrainStorm Summit for patients, clinicians and researchers. In years to come, elements to this preferred patient continuum will be added stemming from those early meetings.
We Must Find a Way
Jace was older than many DMG patients. He was twenty years old when he was diagnosed on May 17, 2019. He was a pre-law college student in Kansas. Doctors told Jace and his family that he had less than a year to live. After the initial shock and fear subsided, Jace decided to make the rest of his time in the world meaningful. When he met two young children with DIPG who looked to Jace for strength, Jace found his purpose. He coined the phrases, “I can’t die, I’m busy,” and “DIPG Won’t Wait”, Jace worked tirelessly to raise awareness about DIPG, to open expanded access for a clinical trial, to comfort younger children going through the same thing. He changed the trajectory of the disease forever. During his battle with DIPG he advocated at the NIH to allow patients to share their data. He also advocated to Congress to prioritize DMG DIPG funding. Other patients also attended such as Noah Halek, Elita Basha, Brandon Oddo and bereaved families as well, giving a face to DIPG. Many who attended this DIPG briefing, also fund the DIPG DMG National Brain Tumor Board today. Their voices echo through rare disease and childhood cancer advocacy events. Jace’s ideas also inspired the work of data sharing and trial design impacted by this tumor board.
When Jace met researchers and clinicians focused on improving options for those with DMG, he challenged them saying, “You must find a better way to share what you know. Kids are getting to trials based off the advice of moms on Facebook! I can’t even quote Facebook as authority for my term papers – but we are basing life or death decisions from these groups”.
A Patient Continuum is Born
If Jace had the opportunity for access to a drug, he would turn to his mom and say, “We have to make that available to all kids”. When a nurse navigator assisted his family to find a regional hospital able to give expanded access, Jace said “every 25-year-old mom with a 4-year-old needs this help, neither of them have found their voices yet.” So, when his self-created ad hoc tumor board provided Jace with two choices in treatment best suited for him – a brand new Car T Cell trial out of Stanford, or a cocktail of medications to use in combination, Jace boldly declared to his mom, “We WILL find a way to have a national tumor board for all DMG patients.”
“Jace was the best in all of us if only we would be so brave”.
Reed Jobs, Managing Director of Emerson Collective
Planning the National Tumor Board
Jace thought all families should be able to quickly access the most current information about best practices and DIPG/DMG treatment options no matter where a patient lived. Regardless of how many DMG patients the provider sees each year; the providers should be privy to a group of DMG providers working on the edge of DIPG/DMG to offer treatment ideas. As his health worsened, Jace grew adamant. Newly diagnosed parents must be offered a better option for a crash course of DIPG. Families deserved a far better resource than Facebook (and his own mom) to discuss options. Jace knew first hand the value of good advice from a team well versed in DMG. He knew the importance of having someone in your corner to navigate roadblocks which threaten to jeopardize treatment access.
We as a tumor board will provide guidance to providers across the country free of charge to share our ideas on the best opportunities for those impacted by DMG DIPG. We hope to increase qualify of life, and perhaps over time, progression free survival or outside survival by better sharing our practices with many other providers. Inspired by our patients legacies, together we will write a new chapter for DIPG DMG.
Jace asked us to do one more thing. “Would you let any provider in the world listen in and learn? Kids are kids no matter where they are from. Could we help share what you have learned beyond the boundaries of those you are able to treat? Perhaps in doing so more are aware of options, inspired to research as well, and perhaps we positively impact their care.” As you might guess, it is hard to tell Jace no. The DIPG DMG Brain Tumor Board invites providers across the world to observe each meeting.
Jace’s Inspiration Continues
Jace passed away on July 3, 2021, but not before inspiring real, permanent change for families facing the disease today and in the future. The DIPG DMG National Brain Tumor Board was established on the first birthday following Jace’s passing, spearheaded by his mom and joined by sixty families, foundations and funds who know DIPG first-hand.
A new DIPG DMG Research Funding Alliance (DDRFA) was also born, powered by families, to first fund the tumor board and then additional grants for DMG and DIPG.
In its first year, DDRFA has funded a staggering $1.6 Million in DMG DIPG Research, Clinical Trials, Data Integration and Tumor Board needs. The patients before Jace, and those who follow, are reflected in the work DDRFA does to fund innovation.
