When our daughter Adelia was diagnosed with Diffuse Midline Glioma, or DMG in February 2023, we were propelled into a world that needs our attention and support. We quickly learned how vastly underfunded pediatric cancer research is, and how promising breakthroughs in labs can never reach patients due to lack of funding. Or sometimes, a trial will be cut off due to lack of funding, causing patients to abruptly change their treatment plans.
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.
Each year, 300 to 500 families in the United States receive the same diagnosis we did. And here's a fact that brings home the urgency of our mission: 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.
We can, and we must, do better for our children.
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.
On August 18th, Team Adelia the Wonder Girl (90 people strong!) ran the 7-mile Falmouth Road Race in loving memory of Adelia, and in support of our 2024 fundraising effort.
Collectively the group raised $255,000 - shout out to our top 5 fundraisers.
Meryl Summers $50,821
Adelia's Friends $17,845
Michael McClellan $8,815
Frank Granara $7,315
Mark DeCost $6,750
Donate to help us reach our $300k goal
Raising money for life-saving research and clinical trials for pediatric brain cancer patients. New treatments do not develop without grassroots campaigns like ours.
In 2023, with the generosity and support of our community we raised $106,000 which was directed to a promising clinical trial for kids with DIPG and DMG, with a goal to launch Spring 2024.
In 2024, we will be raising funds for a vital new Brain Tumor Center at Boston Children’s Hospital and Dana Farber, which will focus on
+ Fueling rapid diagnoses to personalize care
+ Building tumor-specific programs
+ Devising neurosurgical solutions at every turn
+ Creating a diverse community of brain tumor experts
Learn more about the Brain Tumor Center here.
On August 18, Team Adelia the Wonder Girl will be returning to the Falmouth Road Race, fundraising for Dana Farber and we'd love for you to join us!
As of Wednesday, May 15th ALL Dana Farber in-person bibs have been assigned BUT you can still participate virtually.
Ages 10+ have the option to participate in person.
Ages 9 and under can join our virtual team - completing the miles as a group throughout the week of August 11th in our special kid's program.
Learn More
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Open to boys and girls, grades 3 - 5. The $50 entry fee includes participation and t-shirt with all proceeds going to the Brain Tumor Center at Boston Children's Hospital/Dana Farber.
Register by May 31st
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In 2024, we will be raising funds for a vital new Brain Tumor Center at Boston Children’s Hospital and Dana Farber, which will focus on
+ Fueling rapid diagnoses to personalize care
+ Building tumor-specific programs
+ Devising neurosurgical solutions at every turn
+ Creating a diverse community of brain tumor experts
Learn more about the Brain Tumor Center here.
We are thrilled to have community members support our efforts by hosting their own fundraiser initiatives and excited to help you raise money for the Brain Tumor Center at Dana Farber and Boston Children's Hospital.
Click the button below for resources and information.
Information and Resources
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Following Adelia's diagnoses in February 2023, a private Go Fund Me campaign was established to cover the costs to clinical trials and other immunotherapy methods, as well as providing emotional and practical support to Adelia and her family.
This fund remains open as a way to help ease their burden.
Make a donation
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Dana-Farber runners set the pace in the fight against cancer by raising funds to support groundbreaking research and extraordinary patient care. Support our Hingham team, racing towards the ultimate finish line: a world without cancer. All proceeds benefit DMG/DIPG research at Dana Farber.
Make a donation to our team
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The public bid on tickets to Billy Joel and Stevie Nicks, an exclusive Talbot's shopping experience, signed Tom Brady photo and a Paige Railsback painting. All proceeds benefit DMG/DIPG research at Dana Farber.
Auction now closed
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We welcomed 150+ families for an afternoon of fun and fundraising featuring imaginative games, creative play, and summer surprises for all! All proceeds benefit DMG/DIPG research at Dana Farber.
Check out our 2023 event!
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On June 20th, we gathered at Bar Method for a barre class in support for Adelia and raise money for Dana-Farber. 100% of the proceeds were donated to Dr. Daphne's research fund. All proceeds benefit DMG/DIPG research at Dana Farber.
Join our mailing list
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On June 28th, the community gathered at Bobbles and Lace for an evening of drinks, snacks and shopping, and a generous portion of the sales were donated to Dana Farber. All proceeds benefit DMG/DIPG research at Dana Farber.
Join our mailing list
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Following Adelia's diagnoses in February 2023, a private Go Fund Me campaign was established to cover the costs to clinical trials and other immunotherapy methods, as well as providing emotional and practical support to Adelia and her family.
Make a donation
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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.
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