Changing the trajectory of pediatric brain cancer diagnosis and treatment.
What is Diffuse Midline Glioma (DMG)?
A malignant brain tumor that primarily affects children and young adults.
It's characterized by rapid growth and the tendency to spread into surrounding brain tissue, making it difficult to treat.
Adelia “The Wonder Girl” courageously battled DMG for 15-months, leaving us in May of 2024.
What’s Important to Us
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.
Why we fight
Our daughter, Adelia, was diagnosed with Diffuse Midline Glioma, or DMG in February 2023. We call her The Wonder Girl because of her bravery, strength, and courage.
Adelia left us in May 2024, in peace and surrounded by love. Adelia and her family are grateful to her team of amazing doctors at Dana Farber and for the love and support of our community.
In honor of Adelia, and with a fierce commitment to find a cure, we continue our fight for those that follow.
We’re in this together
Since 2023 our grassroots, community-driven, campaigns have raised over $450,000 for life-saving research, support and clinical trials for pediatric brain cancer patients.
New treatments do not develop without grassroots campaigns like ours.
Who we are
We are people who care deeply about fighting for something better for our children.
We work with the leading pediatric cancer experts at Dana Farber and Boston Children’s Hospital to designate our funding to the teams elevating the level of cancer care - directly impacting families experiencing a pediatric brain cancer diagnosis.
We began our fight in 2023 ,when Adelia was diagnosed, and over the course of her 15-month battle we grew into a community of thousands., and we continue to grow.
We believe in a future with better care, and a cure, and we’re going to fight for it. We can, and we must, do better for our children.