Hope from Hailey

Childhood cancer is the leading cause of death by disease in children. Among childhood cancers, brain tumors claim more young lives than any other diagnosis, and Diffuse Midline Glioma (DMG)—including Diffuse Intrinsic Pontine Glioma (DIPG)—is one of the most devastating. These aggressive tumors are considered incurable at diagnosis, and most children survive only 9–11 months after being diagnosed.

But there is hope. Researchers are making important discoveries about the biology of these tumors. New targeted therapies, immunotherapies, and innovative clinical trials are offering renewed hope to families and helping researchers move closer to more effective treatments. With increased research funding, we can accelerate progress and create a future where no child loses their life to pediatric brain cancer.

The Hope from Hailey program exists to make that future possible. Through Hope from Hailey, Princess Hailey's Hope Foundation invests in promising pediatric brain cancer research with one goal: to improve outcomes for children diagnosed today while working toward a cure for tomorrow.

How We Fund Research

Princess Hailey’s "Power Up Against DIPG" Research Fund at St. Jude Children's Research Hospital

Established in honor of Hailey, this dedicated research fund supports groundbreaking work at St. Jude Children's Research Hospital, where Hailey received much of her care. Contributions help advance research to better understand DIPG/DMG and develop more effective treatments for children with these diagnoses.

DIPG/DMG Research Funding Alliance (DDRFA)

Princess Hailey's Hope Foundation is proud to be a member of the DIPG/DMG Research Funding Alliance (DDRFA), a collaborative network of more than 50 foundations and families dedicated to advancing research for DIPG and DMG.  By pooling resources, member organizations can fund larger, high-impact research initiatives than any single foundation could support alone. Research proposals are rigorously reviewed by the alliance's Medical Advisory Council before funding decisions are made. Since June 2022, DDRFA has awarded more than $2.5 million in research grants and provided over $600,000 to support the National DIPG/DMG Brain Tumor Board, helping connect families with expert guidance and treatment recommendations. Together, we are funding the science that will change the future for children diagnosed with these devastating diseases.

Research Projects We've Helped Fund

Spring 2023
Impact of RNA Nanoparticle Vaccine on Immune Response to DIPG/DMG
John Ligon, University of Florida

Winter 2024
Gut Microbiome Signatures of DIPG/DMG Patients Enrolled in PNOC022 Protocol
Jasper Van der Lugt, Princess Máxima Center for Pediatric Oncology

Fall 2024
First $10,000 contribution to Princess Hailey's "Power Up Against DIPG" Research Fund at St. Jude Children's Research Hospital

Fall 2025
Novel Correlative Assessments of Quad-Targeting CAR T-Cell Performance for Children and Young Adults with DIPG/DMG
Rebecca Ronsley, Seattle Children's Hospital

November 2025
$15,000 contribution to Princess Hailey's "Power Up Against DIPG" Research Fund at St. Jude Children's Research Hospital

Winter 2026

Preclinical Evaluation of a Non-Psychoactive Cannabinoid Combined with an Imipridone-Class Small Molecule in Diffuse Midline Glioma Cell Proliferation and Tumor Growth

Dr. Yadav, Children's Mercy Hospital

When a child is diagnosed with DIPG or DMG, treatment options are limited. The current standard of care is radiation therapy, which may help reduce symptoms, slow tumor growth for a period of time, and provide children with more quality time to spend with the people they love. While radiation is not a cure, it can offer precious time and improved quality of life.

After radiation, many families pursue clinical trials or expanded access treatments in hopes of extending survival and improving outcomes. These innovative therapies represent the future of DIPG/DMG treatment, but they are often only available at specialized medical centers located far from a family's home. As a result, families may face frequent long-distance travel while already carrying the emotional and financial burden of a child's cancer diagnosis.

The Hops from Hailey program helps ease that burden by providing gas gift cards to families of children diagnosed with DIPG/DMG who are traveling to participate in clinical trials or expanded access programs. Eligible families must travel at least 50 miles round-trip to receive treatment.

By helping cover transportation costs, Hops from Hailey allows families to focus less on the expense of getting to treatment and more on what matters most—supporting their child throughout the fight.

This grant-funded program is made possible through the generosity of the IronMountain Solutions Employee Peaks Fund and will remain available until funding is exhausted.

Families can review eligibility requirements and complete the application below. Once an application is submitted, a member of our Hops from Hailey team will contact you by email to coordinate the delivery of your gift card.

 During Hailey's battle with DIPG, she always looked forward to receiving mail and visiting the "happy cart" on clinic days. A new stuffed animal, favorite toy, craft kit, or special treat could bring a smile to her face, even on the hardest days. Those small moments of joy reminded us that hope, comfort, and encouragement matter.

Inspired by Hailey's love for these special surprises, our Hugs from Hailey program seeks to brighten the days of children facing cancer. We provide personalized care packages to children battling DIPG/DMG across the United States, filled with items tailored to their interests, hobbies, and favorite things. Each package is designed to remind children that they are loved, supported, and never fighting alone.

Thanks to the generosity of our community, Hugs from Hailey has expanded beyond personalized care packages for children battling DIPG/DMG. Today, we partner with the St. Jude Affiliate Clinic at Huntsville Hospital to provide Hugs for the Holidays gift boxes each December to children receiving treatment for cancer and blood disorders. Community support has also enabled us to provide grocery assistance to local pediatric brain cancer families, helping ease one small burden during an incredibly difficult time.

As funding allows, Hugs from Hailey provides additional gifts of support to children battling DIPG/DMG and their families. This may include helping create special memories, providing DoorDash or grocery gift cards during especially difficult seasons, or meeting other practical needs that arise along the way.  Our goal is simple: to ease burdens where we can and bring a little extra hope, comfort, and joy to families navigating one of the most difficult journeys imaginable.

Every day, children and families receive the devastating news of a DIPG/DMG diagnosis. We learn about many of these children through hospital partners, advocacy networks, and social media, but we know we cannot find every family on our own. If your child has been diagnosed with DIPG or DMG and lives in the United States, we encourage you to complete the application form below so we can send a Hug from Hailey and remind your family that an entire community is standing beside you.

During Hailey's DIPG battle, we were lucky to have excellent care. However, there did come a point when her tumor began to progress and we needed to consult with additional specialists to identify our next best steps. 

For us, this meant individual consultations with oncologists at several institutions across the United States. We had to obtain multiple insurance pre-authorizations for those consultations, which took additional time. When you are faced with a DIPG/DMG diagnosis, time is NOT on your side.

We are proud to partner with other like-minded organizations to commit funds toward the centralized National DIPG/DMG Brain Tumor Board. which offers referring oncologists advice from a panel of DIPG experts on the best treatment paths forward for their patient at critical junctures in a diagnosed child's journey (e.g., at diagnosis, following radiation, first progression). 

This advice is a free service to referring physicians and patient families...and we wish it would have existed when our child was fighting for her life.

To learn more about the National DIPG/DMG Brain Tumor Board, please visit https://dmgnationaltumorboard.org/