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. 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.
Adelia “The Wonder Girl” courageously battled DMG for 15-months, leaving us in May of 2024.
Spotlight
Cape Cod Irish Traditional Musicians Adopt “The Wonder Girl’
Thank you to Bill Black and Cat’s Melodeon for your generous fundraising efforts.
It all started when Bill Black spotted a notice in the May edition of the Cape Cod Symphony newsletter announcing a fund-raising concert of classical music to benefit pediatric brain cancer research. There was a picture in the newsletter of a beautiful little girl - our own Adelia Summer, the "Wonder Girl", who had fought so bravely but ultimately unsuccessfully against this dread condition.
Came the thought: if classical musicians can do it, why not we traditional Irish types?
Our "Cat's Melodeon" session group had raised funds for various charities before - Cape Cod Veterans, Project Bread, Toys for Tots, Mass. Special Olympics - and we couldn't see any reason why we couldn't do the same for Adelia.
So we devoted four months of Saturday afternoons playing our beloved jigs, reels, hornpipes, polkas, etc., as usual out of love for the music, for each other, for the pub patrons, but now too for the Wonder Girl. Twice an afternoon the pub patrons were encouraged (inadequate word - maybe "exhorted"?) to put a few bob in what would normally be a "musicians' tip bucket" into the same bucket that had now been marvelously re-purposed (as they say) for Adelia the Wonder Girl.
And at the end of the campaign, we were $3100 to the good.
And finally, some of the musicians did their tunes and songs on the mv Monhegan, Hyline's Cape Cod Canal cruise boat. A mention of what we were doing for Adelia in Hyannis unexpectedly produced a baseball cap full of bills. Presto - another $400!
So many people to thank: our musicians and the management and staff at the Auld Triangle. Pub patrons who filled the bucket and boat passengers who filled the hat . . . we can't know all the names. But God does, and we pray that He's as kind to them as they were to the cause represented by a little girl they didn't know - our Wonder Girl.
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.
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.
Get involved
There are so many ways to get involved. Join us in a way that inspires you.