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Two leading foundations in the field of pediatric brain cancer research funding, Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation, are uniting as one organization, ChadTough Defeat DIPG Foundation, to elevate and amplify their impact on finding a cure for DIPG.
In September 2014, two families, 500 miles away from each other, were hit with the most devastating news imaginable; each of their sons was diagnosed with the deadliest form of pediatric brain cancer and was given just 9 months to live.
While searching for hope and answers, Tammi and Jason Carr, in Michigan, and Jenny and Mark Mosier, in Maryland, began a journey through the darkest days of their lives. By the end of the following year, each family endured the inevitable heartbreaking loss of their sons, Chad Carr, age 5, and Michael Mosier, age 6, to diffuse intrinsic pontine glioma (DIPG).
Throughout that excruciating time, the Carrs and Mosiers uncovered their shared passion for honoring their sons through raising research dollars. They, like so many other DIPG families, desperately wanted to help change the outlook for future families forced to face the horror of DIPG. Both families established foundations with a common goal — to find a cure for DIPG.
Jason and Tammi Carr established The ChadTough Foundation shortly after Chad was diagnosed. Through social media, Tammi discovered the power her voice carried in raising awareness. The community around her was inspired to help, and soon it wasn’t just her town of Saline rallying behind the mission. With a long family history with the University of Michigan, alumni from across the nation also began to surround the Carr family with support. Through Tammi and Jason’s committed efforts, their message eventually spread throughout Michigan, then across the United States and beyond. Over time, other families joined the Carrs’ efforts to fund promising research by becoming family partners.
Michael Mosier Defeat DIPG Foundation assembled a Scientific Advisory Council, composed of leading experts on DIPG. The purpose of the council was to conduct a rigorous review and scoring of grant applications submitted to the foundation, and to make recommendations to the Defeat DIPG Board of Directors to ensure the Michael Mosier Defeat DIPG Foundation effectively used its resources to fund the most innovative DIPG research projects.
The Mosiers, too, felt compelled to take action against DIPG. Given the lack of research funding for this disease, they felt it was imperative to speak out and raise funds for research so that new, effective treatments could become a reality.
“There was this huge void after we lost Michael,” explained Jenny Mosier. “Mark and I wanted to channel our heartache into something good and try to change the future for other families who would one day be in our shoes.” In 2015, the couple founded Michael Mosier Defeat DIPG Foundation. Other families across the country soon joined their efforts, as well, by becoming chapters or partner families.
When the Carrs learned of Defeat DIPG’s Scientific Advisory Council, they were eager to get involved.
“The Scientific Advisory Council the Mosiers put together is incredible,” said Jason Carr. “It’s made up of some of the best minds out there working to eradicate DIPG. As soon as Jenny and Mark told us what they were doing, we knew we had to be a part of it.”
“We admired the impact the Carrs were making on pediatric brain cancer research through The ChadTough Foundation,” said Mark Mosier. “Given our shared mission for finding a cure, we realized that combining our resources provided an opportunity for both organizations to amplify our research funding to fund more projects at a higher level.”
The two foundations decided to join forces to fund research together, and in the last 4 years, they have jointly committed $7 million across 21 institutions around the world. In addition to the research they have funded together, the two organizations have committed another $5 million individually, bringing the total to over $12 million in committed research funding.
Now, after four years of working together in the fight against pediatric brain cancer, The ChadTough Foundation and Michael Mosier Defeat DIPG Foundation have announced they will officially merge and become ChadTough Defeat DIPG Foundation. This union positions them to leverage the strengths of each, eliminate duplication, and gain efficiencies to maximize the amount of funds that can be granted toward the mission of inspiring and funding game-changing research in the field of pediatric brain cancer with an emphasis on the deadliest form, DIPG.
Foundations like ChadTough and Defeat DIPG are the primary source of funding for researchers working toward a cure for DIPG. Less than 4% of government cancer research funding is directed to all forms of pediatric cancer, with less than 1% directed to all forms of pediatric brain cancer. The funding provided so far from the two foundations, as well as others, has transformed the outlook for DIPG from hopeless to hopeful, with doctors now optimistic that a cure is on the horizon, a marked change from the prospects in 2014 when Chad and Michael were diagnosed. Despite this progress, researchers still have a lot of work to do to change the current survival rate, which is nearly 0%.
“This merger is an exciting and natural step, from my perspective,” said Dr. Carl Koschmann, a pediatric neuro-oncologist in the Department of Pediatrics at Michigan Medicine. “The Carrs and Mosiers both approach DIPG research with a similar emphasis on collaboration, transparency, and improving outcomes in real time. From a research and personal perspective, those of us doing research and clinical care in this space know that these two families/foundations are 100% with us with every step. I’m excited to see that they will now fully merge, and I look forward to moving the needle even faster.”
While both the Carrs and the Mosiers will always grieve the loss of their sons, creating a legacy that offers hope to other fighting families has given them a way to channel their pain into action. The coming together of these two foundations, of these two families, marks an inflection point in the world of pediatric brain cancer research funding. What started out as tributes to their own sons has evolved to be about much more. They share a deep commitment to honoring every child who has fought DIPG and fighting for every family facing a DIPG diagnosis in the coming weeks, months, and years. And these two families are not alone in that commitment.
ChadTough Defeat DIPG Foundation believes a collaborative approach is the only way a cure will be found. The foundation therefore welcomes the help of other families who want to join in funding pediatric brain cancer research (with an emphasis on DIPG) in honor of their children through the Family Partner program. They are currently joined by 15 official Family Partners from across the country whose lives have been impacted by pediatric brain cancer and who are committed to the mission of the foundation. This combined power will lead to more funding of more research, with the goal of a cure for DIPG and other pediatric brain cancers sooner than would otherwise be possible.
CHADTOUGH DEFEAT DIPG FAMILY PARTNERS:
The Albom Family: Team Chika
The Boivin Family: Team Julian
The DelVerne Family: #ColtStrong
The Jones Family: Team Carter
The O’Brien Family: Team Caroline
The Olympia Family: Connor Man
The Petrzelka/Shaker Family: Team Owen
The Reinhold/Hatzivasilis Family: Team Benjamin
The Ruddy Family: Team Tommy
The Sawtelle Family: Team Arden
The Sieck Family: Team Lucy
The Steensland Family: Team Grant
The Thompson Family: Team Emma
The Varney Family: #SophieStrong
The Weaver Family: Vivian Rose
ChadTough Defeat DIPG Foundation is laser-focused on achieving its vision of a world where DIPG is no longer a death sentence. By harnessing the collective power of the Carrs, Mosiers, and their Family Partners, the foundation will build on the work they have started and expedite progress towards a cure.