Fighting for Their Lives: A Model for Pediatric Disease Communities
By Jacque Myers
“What if I decided I only had a year to make an impact?”
That was the question Lisa Ward, co-founder of the Tough2gether Foundation, invited the audience to consider during opening remarks for the BrainStorm Summit to End Childhood Brain Cancer.
It was the question her deceased son Jace asked himself when he was told he only had nine months to live, after being diagnosed with diffuse intrinsic pontine glioma (DIPG).
“DIPG/DMG won’t wait for us to find our footing,” said Lisa, referring to the particularly aggressive form of pediatric brain cancer that took Jace’s life. “We must work together, and we must work faster.”
Domains of influence: The Socio-Ecological Framework (SEF)
The BrainStorm Summit demonstrated remarkable power by bringing together organizations from multiple perspectives to form a networked disease community.
“We are completely redefining and reshaping what a cancer community can be,” said Brooke Ward, Jace’s sister and fierce advocate. “We’re not only making real changes; we’re continuously looking for the areas that need work.”
The DIPG DMG community offers a blueprint that other pediatric and rare disease communities can replicate to mobilize resources and drive progress, illustrated below through the Socio-Ecological Framework (SEF).
SEF captures the multiple areas of influence necessary to address the continuum of cancer prevention and care. As noted by researchers from the Pacific Regional Cancer Control Partnership, the framework provides a tool to pinpoint successful intervention strategies for resource-limited contexts like rare disease communities.
“There is a dearth of information regarding national and international partnerships for health that are community-centric, multi-level, multi-system, and operationalized in a multi-cultural resource-limited context,” wrote Neal Palafox, et. al. The researchers concluded that the characteristics and fundamental building blocks of organizations that have demonstrated progress and sustainability — like the DIPG DMG community — would help address that gap.
Building blocks for pediatric brain cancer “Combat Operations”
Scanning the room at the Tough2gether Breakfast, you could see families huddled together in matching T-shirts supporting their DIPG DMG fighters and angels. You could see physicians, researchers, data scientists, and lobbyists. But most of all, you could see palpable strength and resolve.
“I do not call it a journey, because it’s a full-on war,” said one mother, whose daughter has spent a quarter of her young life fighting the terminal disease. That resolve is one of five key characteristics that fuel the DIPG DMG community.
1. Relentless purpose.
During a Congressional briefing to promote DIPG awareness, Jace shared that his hope came from a “warrior-hearted group of Facebook moms.” He said his mother found a group of selfless, bereaved parents online who had more information than his care team, and they connected him to a clinical trial that added valuable time to his life.
“I can’t promise I will be here next year,” he said, explaining that DIPG would eventually take his sight, his hearing, his speech, and eventually his breath.
As they go through this unthinkable battle, DIPG/DMG families often create foundations to support and honor their fighters and further the road to a cure. More than 60 of these foundations have joined together to create the DIPG/DMG Research Funding Alliance (DDRFA) to fund research, trial access, and data needs at the speed of DIPG/DMG.
The community won’t stop fighting until they can declare victory.
2. Crucial information.
Since Jace gave his speech in February 2020, a group of “warrior-hearted moms” have banded together to create DIPG OneLink, a centralized hub of up-to-date information accessible by families, clinicians, and researchers. The site, which is part of the broader DIPG/DMG information network, offers a parent-to-parent narrative based on where people are in their battle, from newly diagnosed to fighting for themselves, and others.
3. Boundless collaboration.
After discovering the trial that extended his life, Jace had a vision for a group of doctors who would come together and find clinical studies for patients like him. Together with his mother and the DDRFA, they set out to make his vision a reality.
“The DIPG/DMG National Brain Tumor Board is a beautiful story for rare and neglected diseases,” said Dr. Carl Koschmann, Clinical Scientific Director of the University of Michigan Chad Carr Pediatric Brain Tumor Center. The board meets twice a month to review cases at inflection points such as diagnosis, post radiation, and relapse to provide information and connections for patients and families.
4. Dauntless innovation.
Despite significant advancements in pediatric oncology, research shows that the 5-year survival rate for brain stem gliomas like DIPG and DMG actually went down slightly from 1960 to 2000. Dr. Elaine Mardis, co-executive director of the Steve and Cindy Rasmussen Institute for Genomic Medicine at Nationwide Children’s Hospital, acknowledged that the standard of care for DIPG/DMG has not changed in more than 40 years.
Industry leaders are working to change that paradigm through innovations including federated learning, multi-omics, radiomics, and ambiperspective natural history. All of these innovations are grounded in the idea of integrating research, clinical, and real-world data to unlock disease insights and evaluate treatment pathways.
“The only way we get ahead is by sharing data and information,” said Mardis. “This is a real commitment, and I think it’s a commitment that makes sense.”
5. Battlespace agility.
In war, battlespace agility refers to the speed at which an organization can convert new knowledge into actionable strategies. Referred to in healthcare as translational science, agility requires a combination of intelligence and operations to develop new approaches, demonstrate efficacy, and disseminate knowledge. Initiatives such as the Children’s Brain Tumor Network and My DIPG Navigator are advancing translation across the care continuum and extending the life expectation and quality for DIPG/DMG patients.
“I can’t die, I’m busy.”
Through an experimental drug called ONC201 and five doses of CAR T-cell therapy, Jace and his care team more than tripled his life expectancy. He joined the Emerson Collective and spent his last months advocating for DIPG awareness and research.
When asked about his prognosis, Jace would often tell people, “I can’t die, I’m busy.”
He had a year to make an impact, and through his legacy, fighters and families can hope for a day when DIPG/DMG has stolen its last breath.
and their impact is reverberating across the DIPG/DMG community.
Acknowledgements
Slalom, Inc. was a platinum sponsor of the BrainStorm Summit. Together with our partners from AWS and xCures, we supported the research, design, development of DIPG One Link and the health data technology platform being used for the ambiperspective natural history study. We want to thank Lisa Ward, Stacey Sands, Sarva Channarajurs, and Misha Mehta for inviting Slalom to be a part of their journey, as well as the hundreds of DIPG/DMG fighters, families, and fans for their pioneering courage and tenacity. To support Jace’s legacy and the DIPG/DMG community, visit Tough2gether.org.
Slalom is a global consulting firm that helps people and organizations dream bigger, move faster, and build better tomorrows for all. Our healthcare and life sciences industry teams partner with healthcare, biotech, and pharmaceutical leaders to strengthen their organizations, improve their systems, and help with some of their most strategic business challenges. Learn more and reach out today.
