Changing the trajectory of pediatric brain cancer diagnosis and treatment
What is DMG?
DMG is a malignant brain tumor that primarily affects children and young adults. It's characterized by rapid growth and the tendency to spread into surrounding healthy brain tissue like spider webs, making it difficult to treat. It is the same cancer as DIPG (diffuse intrinsic pontine glioma) due to the same, extremely aggressive mutations, but just differ in location of the brain.
The standard of care for this cancer, which is 6 weeks of radiation and then level I clinical trials, has not changed since 1963 when Neil Armstrong’s daughter passed away from the same cancer. There has yet to be a drug FDA approved that is successful in treating this cancer. We are determined to keep fighting in Adelia’s honor, and for all of the other children we have lost, that are fighting, and will be diagnosed tomorrow and the day after. Children should not be given a death sentence, and families deserve to see their beautiful children grow up to live fulfilling lives.
What’s Important to Us
Doing better for our kids.
Raising Awareness
RARE, BUT NOT-SO-RARE
Each year, 300 to 500 children in the United States are diagnosed with Diffuse Midline Glioma, or DMG.
Gliomas are the most common form of brain malignancy and are associated with resistance to therapy and high mortality.
A greater sense of urgency can not only save families from the suffering we endured, but open a path to find a cure for all pediatric brain cancers .
Improving Care
CHANGING THE STATUS-QUO
Unlike most other pediatric cancers, survival for Diffuse Midline Glioma has not changed in over 50 years. The average survival rate is 8-11 months, with about 10% of children survive at least 2 years after diagnosis.
The only standard of care for DMG is radiation, a treatment that has remained unchanged since Neil Armstrong's daughter received her diagnosis in 1962.
Given the failure of conventional treatments, greater efforts must be made to fund the development of targeted care.
WE CAN GET THERE
Funding a Cure
Only 4% of all federal funding for cancer research is allocated for pediatric cancer research. And of that 4% - only 1% is allocated for pediatric brain cancer - amounting to a mere 0.04% of all federal funding for cancer research.
For a condition that is the most common type of brain tumor in children under the age of 5, these numbers are startling.
Progress doesn’t happen without grassroots campaigns like ours.
“It is hope that propels us forward, and gives us meaning to keep living and fighting.
I hope that one day the memories will be happy ones, and I hope that one day there will be effective treatment for pediatric brain cancer, so that families like us will not receive a death sentence, but a plan and a path forward. We have a long road ahead, but will never stop fighting.”
Meryl, Adelia’s loving mom
Resources
Study finds improved survival for incurable brain tumor, providing ‘a crack in the armor’ (Michigan Medicine, August 16, 2023)
For the first time, researchers have found a potential drug candidate that improved outcomes for patients with a type of childhood brain tumor for which there are no effective treatments. The compound, called ONC201, nearly doubled survival for patients with diffuse midline glioma or diffuse intrinsic pontine glioma, compared to previous patients.
Gliomas lean on pyrimidines (Nature Reviews Cancer, September 21, 2022)
Gliomas are the most common form of brain malignancy and are associated with resistance to therapy and high mortality.
Now, two studies reveal a targetable metabolic signature in glioma that could be exploited to treat these cancers.
A druggable addiction to de novo pyrimidine biosynthesis in diffuse midline glioma (Cancer Cell)
Unlike most other pediatric cancers, survival for DMGs has not changed in over 50 years. Given the failure of conventional therapeutic modalities, considerable effort has been devoted to development of targeted therapeutics.
Get involved
There are so many ways to get involved. Join us in a way that inspires you.