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
“🙏❤️ 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
Anonymous
Jan 25, 2026
Indiana, US
Mike & Chris Kopec
Jan 24, 2026
Ohio, US
“From Ter & Jen, Tom & Jean, Rod & Jean, Chris & the kids and Jeanne & Chaz to JP with love.”
Jeanmarie McNiff
Jan 23, 2026
New York, US
“Go, John Paul! Thank you for helping find a cure!”
Laura Hudlow
Jan 22, 2026
Georgia, US
Martha Foster
Jan 21, 2026
Virginia, US
Virginia Colwell
Jan 21, 2026
Virginia, US
Kathy Mears
Jan 21, 2026
Indiana, US
Andrea Horsley
Jan 21, 2026
Virginia, US
Mike Rutherford
Jan 21, 2026
Pennsylvania, US
Cindy Lindle
Jan 21, 2026
Kentucky, US
“From Lisa & Roger Ward, with love!”
Anonymous
Jan 19, 2026
US
“Please accept this donation in honor of Dr. Paul Macri. I will keep John Paul and your family in my prayers Nick. James Kieft”
James Kieft
Jan 19, 2026
Indiana, US
“In honor and memory of Dr. Macri and for John Paul's ongoing journey. With love, Sue Bell”
Sue Bell
Jan 18, 2026
District of Columbia, US
“John Paul blessings upon you. Nick & Katie prayers for strength.”
Connie Patton Varga
Jan 18, 2026
Indiana, US
“Your family is in my prayers Nick.”
Daniel Bonham
Jan 18, 2026
Indiana, US
“Thoughts and prayers, Jan Christianson and Family”
Tamara Christianson
Jan 18, 2026
Indiana, US
“Sympathy and prayers to Pam and family. Ginger and Dennis Hixenbaugh”
Dennis Hixenbaugh
Jan 17, 2026
Indiana, US
“Sending prayers and love to all of the Macris. May God’s arms comfort you. Frank & Suzanne Niemiec”
Suzanne Niemiec
Jan 17, 2026
Indiana, US
“Prayers and best wishes for John Paul and his entire family. God bless you!”
Patricia Paul
Jan 17, 2026
Michigan, US
Frank Serge
Jan 16, 2026
Illinois, US
“I will keep John Paul and your family in my thoughts abd prayers.”
Daniel Baird
Jan 16, 2026
Indiana, US
“Please accept this donation in memory of Dr. Paul Macri. God bless John Paul and the entire Macri family. We will continue to keep you in our prayers. ~Brian and Roxy (Kish) Artusi”
Roxy Artusi
Jan 16, 2026
Indiana, US
“We are keeping all of your family in our prayers and hope for God's grace. Cheryl and Keith Peczkowski (friends of sandy and Jim Macri)”
Cheryl Peczkowski
Jan 16, 2026
Indiana, US
“For John Paul Macri in honor of his grandfather Paul Angelo Carl Macri”
James DHaenens
Jan 16, 2026
Indiana, US
“In memory of Paul Macri, running partner and friend. R.I.P”
Rocky Geans
Jan 16, 2026
Indiana, US
“In memory of Paul Macri and John Paul Macri and his struggles. God bless both!”
David Walorski
Jan 16, 2026
Indiana, US
Jane Kopec Bentkowski
Jan 16, 2026
Indiana, US
Marci Goolsby
Jan 16, 2026
New York, US
Karen Drudi
Jan 16, 2026
Massachusetts, US
“In Memory of Dr. Paul Macri who was never too busy for house calls.”
Mitchell Meersman
Jan 15, 2026
Illinois, US
“In loving memory of Dr. Paul Macri. I was a frequent visitor to the Macri house as a teenager, and Dr. Macri taught me innumerable life lessons about hospitality, humor, jazz, and conservatism. Rest in peace.”
Nathan Huang
Jan 15, 2026
California, US
“God Bless you, John Paul.”
Teresa Cassady
Jan 15, 2026
Kentucky, US
“In loving memory of Dr. Macri from the Thomson Family, and proud supporter of John Paul’s Army!”
Bobby & Erin Thomson
Jan 15, 2026
Virginia, US
“In memory of Paul Macri”
Mia Shaffer
Jan 15, 2026
Indiana, US
Ellen Gregory
Jan 15, 2026
New Jersey, US
“My sympathies to Pam, Christy and Roy, Lisa, Vince and Nick and Kati during this difficult time. Remembering a wonderful Dr. that l worked for , for 23 years. I will always cherish the years of working together.”
Phyllis Miller Martin
Jan 14, 2026
Florida, US
“Sending our love and prayers to the Macri family”
Oron Strauss
Jan 14, 2026
Virginia, US
“In memory of Paul Macri”
Tom &Judy Gettelfinger
Jan 14, 2026
Indiana, US
Alissa Briggs
Jan 14, 2026
Virginia, US
Bob Gilewski
Jan 14, 2026
Kentucky, US
“Sending prayers to the Macri Family.”
Tami McNally
Jan 14, 2026
Indiana, US
“We are very sorry for your loss. Please accept this $500 donation in memory of Paul Angelo Carl Macri.”
Linebach Funkhouser, Inc.
Jan 14, 2026
Kentucky, US
“Thoughts and prayers”
Renee Bulger
Jan 14, 2026
Indiana, US
$22,409.98
$3,000,000.00
Virginia, United States
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