John Paul’s story
On March 21, 2025, our healthy, joyful 8‑year‑old son John Paul was diagnosed with an inoperable, incurable brain tumor called DIPG (Diffuse Intrinsic Pontine Glioma) after episodes of tripping and double vision. We looked to the doctors for answers, only to be told his life expectancy was 2–11 months and that there was no cure, only six weeks of palliative radiation and the possibility of entering a Phase 1 clinical trial. While the doctors informed us about the trials, we had to choose on our own which one to try – no one would tell us what the best option would be. Today, we travel across the country every three weeks so John Paul can receive CAR‑T immunotherapy in Seattle, doing everything possible to save his life.
John Paul loves to learn and approaches the world with a curiosity far beyond his years, asking questions about everything and everyone he meets. He is a walking encyclopedia of Star Wars knowledge, has the best sense of humor, and finds ways to make people laugh even on hospital days. He finds joy in helping others, sharing his faith, cheering loudly for James Madison University sports, and his genuine interest in people means he makes friends everywhere he goes—from school to airplanes to clinic waiting rooms. He dreams of serving in the US Military when he grows up as well as being a mental health doctor.
What makes DIPG so devastating
- DIPG tumors grow inside the brainstem, which controls vital functions like breathing and movement, making surgery impossible in most cases.
- DIPG is one of the deadliest brain tumors, with a median survival of about 9-11 months from diagnosis. Fewer than 5% of children survive two years after diagnosis despite decades of research.
- Children with DIPG slowly lose the ability to move, talk, eat and smile, all while their brain is still functioning.
- Standard radiation can briefly shrink the tumor or improve symptoms but almost never cures the disease, and relapses are almost universal.
- There are no FDA‑approved curative treatments, so most children must rely on early‑phase clinical trials that are still determining safe dosing.
The Genesis App
Hospitals often struggle to share detailed records for research because of privacy rules and incompatible systems, slowing urgently needed progress. Accessing children’s medical data can take months to years.
To change this, we are helping build the Genesis App, which bypasses these barriers by empowering families to upload their child’s data in real time, voluntarily and securely, turning every child’s journey into critical knowledge for the next child. Medical records uploaded by parents and caregivers into the Genesis App will be sent directly into a state of the art pediatric brain tumor database in partnership with leading academic experts. This database will combine imaging, genetic, and clinical data from children across the country, enabling an AI engine to detect patterns, treatment responses, and new therapeutic targets much faster than traditional research alone.
Why your donation is urgent
Building, deploying, and sustaining Genesis and its infrastructure for the first three years will cost $3 million, covering secure development, data storage, compliance, and support so families and researchers can rely on this tool. Children with DIPG/DMG do not have time to wait for slow, traditional research cycles—every month without this platform means lost data, lost insights, and lost chances for better treatments.
Your gift today helps:
- Accelerate discovery of new treatments for DIPG/DMG and other pediatric brain tumors
- Give families a way to directly fuel research with their child’s real‑world data
- Honor John Paul and children like him by transforming their fight into life‑saving knowledge for others
Please partner with us so that one day, no parent will hear, “There is nothing we can do.” Your donation today helps turn data into hope and hope into cures.
Honor Roll
“Continued prayers for John Paul Macri and his loving family”
Carolyn Morrison
May 25, 2026
Delaware, US
Anonymous
May 12, 2026
Virginia, US
Julia Reed
May 11, 2026
Virginia, US
Morgan Crable
May 8, 2026
California, US
Deborah Dawson
May 7, 2026
Virginia, US
Michelle Rehberger
May 7, 2026
Texas, US
“from Conor cookies”
Jessi Renshaw
Apr 30, 2026
Virginia, US
Mary Pat Sternberg
Apr 29, 2026
New York, US
Anonymous
Apr 28, 2026
Maryland, US
Susan Ownby
Apr 22, 2026
Virginia, US
Chelsea Ettere
Apr 19, 2026
Virginia, US
Gianni Savo
Apr 18, 2026
New York, US
Lindsey Rush
Apr 18, 2026
Pennsylvania, US
Anonymous
Apr 18, 2026
New York, US
Ann Smith Chenevey
Apr 18, 2026
Virginia, US
Jodi Macfarlan
Apr 17, 2026
Virginia, US
“Dedicate to John Paul Macri!!”
Debbie Hoeg
Apr 17, 2026
Virginia, US
Kerry Demarco
Apr 17, 2026
Virginia, US
Catherine Tyskowski
Apr 17, 2026
Virginia, US
Patrick McGraw
Apr 17, 2026
Virginia, US
“Keep going John Paul! Your story is inspiring others all over the world!”
Peter Carr
Apr 17, 2026
Nevada, US
Anonymous
Apr 17, 2026
Massachusetts, US
Hart Franko
Apr 17, 2026
Virginia, US
Anonymous
Apr 16, 2026
Illinois, US
“Looking forward to JP’s cancer-free future!”
Cheryl Czapp
Apr 16, 2026
Virginia, US
“Praying for John Paul and a cure.”
Adriana Vilar
Apr 16, 2026
Virginia, US
Courtney Porter
Apr 16, 2026
Virginia, US
Susan E Karman
Apr 16, 2026
Kentucky, US
“You are a ROCKSTAR!”
Kelli Cunningham
Apr 16, 2026
Virginia, US
Lindsay Samora
Apr 15, 2026
Colorado, US
“keep at it, John Paul!”
Emily Losik
Apr 15, 2026
Kentucky, US
Erin G
Apr 15, 2026
Massachusetts, US
Neil Lannuier
Apr 15, 2026
Arizona, US
Sharon Gray
Apr 15, 2026
Florida, US
Anonymous
Apr 15, 2026
Kentucky, US
Anonymous
Apr 15, 2026
Kentucky, US
“phillippians 1:6”
Carter S
Apr 15, 2026
Virginia, US
“Cookies 🍪”
Jessi Renshaw
Apr 2, 2026
Virginia, US
“sending love, strength and healing thoughts to John Paul and family”
Cathy Onufrychuk
Mar 18, 2026
Virginia, US
“praying everyday for a cure for this young man and the others fighting this hirrible tumor”
Barbara Gerber
Mar 18, 2026
Virginia, US
“praying for JP and the scientists.”
Constance Hylton
Mar 18, 2026
Virginia, US
Anonymous
Mar 1, 2026
Kansas, US
“Fervent prayers for John Paul and family”
Jim Tallman
Feb 26, 2026
Indiana, US
“🙏❤️ from the Longworth family”
Nicholas Longworth
Feb 25, 2026
Virginia, US
“from Conor Cookie sales”
Jessi Renshaw
Feb 24, 2026
Virginia, US
Anonymous
Feb 23, 2026
District of Columbia, US
Mark Bradley
Feb 23, 2026
Wisconsin, US
Michelle Mondrey
Feb 22, 2026
Virginia, US
Donna Krone
Feb 22, 2026
Massachusetts, US
Kimberly Whelan
Feb 22, 2026
Virginia, US
Kathy Swinehart
Feb 22, 2026
Virginia, US
Jody Wiseman
Feb 21, 2026
Indiana, US
Scott Glasser
Feb 21, 2026
North Carolina, US
Staci Abelove
Feb 19, 2026
Florida, US
Anonymous
Feb 17, 2026
Texas, US
Anonymous
Feb 16, 2026
Virginia, US
Anonymous
Feb 15, 2026
Illinois, US
Jodi Bowman
Feb 15, 2026
Virginia, US
Craig Sander
Feb 13, 2026
Indiana, US
“Super Bowl Squares Fundraiser”
Kathleen Macri
Feb 9, 2026
Virginia, US
Anonymous
Feb 7, 2026
Texas, US
“from Conor R.”
Jessi Renshaw
Feb 7, 2026
Virginia, US
“Love and prayers, always, for John Paul and others with this awful diagnosis!”
Martha Carnahan
Feb 6, 2026
Georgia, US
“We are all holding John Paul and your family close in prayer without ceasing”
Jennifer Freitas
Feb 5, 2026
Ohio, US
Shauna Weinhold
Feb 3, 2026
Virginia, US
“Continuing to pray for John Paul and a cure!”
Amanda Allen
Feb 2, 2026
Georgia, US
“Donating for Jacqueline Huber. Blessings and prayers for John Paul and family.”
Kevin Cassidy
Feb 1, 2026
Illinois, US
“Thinking of your family as you build a resource to fight this disease”
Dawnita Altieri
Jan 30, 2026
Pennsylvania, US
Alison Pardalis Johnson
Jan 30, 2026
New York, US
James Acors
Jan 29, 2026
Virginia, US
Beth Olson
Jan 29, 2026
Indiana, US
“Love and prayers.”
The Gaberdiels
Jan 29, 2026
Virginia, US
katrina FETZKO
Jan 28, 2026
Connecticut, US
Sanjay Nayar
Jan 28, 2026
Maryland, US
“We lost our daughter to breast cancer in October. No one should lose a child. I hope this app helps to save lives and spare other patents from devastating loss.”
Jill Hummel
Jan 28, 2026
Illinois, US
Justine Van Wie
Jan 28, 2026
Virginia, US
Tom Watson
Jan 27, 2026
Illinois, US
Anonymous
Jan 27, 2026
Maryland, US
“Donating in memory of John Pauls Grandpa Dr. Paul Macri. our prayers are with you.”
Walt Ginter
Jan 27, 2026
Indiana, US
Randy & Cindi Stoner
Jan 27, 2026
Indiana, US
$28,244.98
$3,000,000.00
Virginia, United States
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