Hope from Hailey

 Hope from Hailey: Funding Research. Driving Progress. Giving Kids a Chance.

Cancer is the leading cause of death by disease in children. Brain cancer takes more young lives than any other childhood cancer, and Diffuse Intrinsic Pontine Glioma (DIPG) is the most aggressive form—responsible for nearly half of those losses. DIPG is considered terminal at diagnosis, with a median survival of just 9–11 months.

But there is hope.

Researchers are gaining new insights, targeted therapies are emerging, and innovative clinical trials are beginning to extend survival times. With increased funding, we can accelerate breakthroughs and improve outcomes for every child diagnosed.

Our Hope from Hailey program raises funds to support DIPG research with one purpose: to find effective treatments and, one day, a cure.

We support research in two primary ways:

1. Princess Hailey's DIPG Research Fund - St. Jude Children's Research Hospital

We created this fund at St. Jude, where Hailey received much of her care. Contributions help advance St. Jude’s work to better understand and treat DIPG.

2. DIPG/DMG Research Funding Alliance (DDRFA)

As part of DDRFA—an alliance of 50+ foundations and families—we combine resources to fund high-impact DIPG/DMG research. Grant proposals are submitted each fall and spring and reviewed by the Medical Advisory Council before awards are made. Since June 2022, DDRFA has funded more than $2.5 million in research grants and $600,000 in tumor board support, and we are proud to contribute to this progress.

Research Projects We've Helped Fund

• Spring 2023: Supported Dr. John Ligon’s project
  “Impact of RNA Nanoparticle Vaccine on Immune Response to DIPG/DMG”
  (University of Florida)
• Winter 2024: Funded Dr. Jasper Van der Lugt’s study
  “Gut Microbiome Signatures of DIPG/DMG Patients Enrolled in PNOC022 Protocol”
  (Princess Máxima Center for Pediatric Oncology)
• Fall 2024: Made our first $10,000 contribution to Princess Hailey’s DIPG Research Fund at St. Jude Children's Research Hospital
• Fall 2025: Contributed to Dr. Rebecca Ronsley’s project
  “Novel Correlative Assessments of Quad-Targeting CAR T-Cell Performance for Children and Young Adults with DIPG/DMG”
  (Seattle Children’s Hospital)
• Winter 2025: Made a $15,000 contribution to Princess Hailey's DIPG Research Fund at St. Jude Children's Research Hospital

 Far too many children face a diagnosis with no curative treatment. There is still so much work to do—and every gift moves us closer to hope, to time, and to healing. 

When a child is diagnosed with DIPG, treatment options are minimal. The standard of care for a child diagnosed is typically 30 rounds of photon radiation. While these radiation treatments are palliative, they can help to reduce or eliminate symptoms and temporarily halt tumor growth, giving the child more quality time with their family.

Following radiation, some families enroll their child in a clinical trial. While trial medications and treatments are experimental, they offer hope for more "good days" to families and children faced with this diagnosis. However, clinical trials for DIPG are not available at all hospitals, and affected families may need to travel significant distances to access those potentially life-extending treatments.

Our Hops from Hailey program provides gas gift cards to families of children diagnosed with DIPG/DMG who are enrolled in clinical trials/expanded access programs at hospitals that are at least 50 miles away (round-trip) from their homes to help offset the cost of travel to their child's treatment center. 

This grant-funded program, made possible by IronMountain Solutions Employee Peaks Fund, will remain open until funds are exhausted.

Our Hops from Hailey eligibility criteria and application form can be accessed below. Once you have submitted the form, our Hops Coordinator will contact you via email to coordinate the delivery of your gift card.

While Hailey was battling DIPG, she looked forward to receiving mail and to visiting the "happy cart" on clinic days. Often, a special toy, stuffed animal, or treat helped bring her joy, even if she wasn't feeling well.

Our Hugs from Hailey program seeks to brighten the days of children diagnosed with cancer.  We send personalized care packages to children battling DIPG/DMG to encourage them to keep fighting and send treats and toys to the clinic to let these little warriors know how special they are. 

 As funding allows, we also gift adaptive equipment (e.g., specialized utensils, walkers, arm weights, etc.) for children fighting DIPG/DMG who are experiencing new challenges in their daily lives due to disease progression. 

Children are diagnosed with DIPG/DMG each day. Our primary means of identifying children who have been diagnosed are social media and our hospital contacts. But if you are a DIPG/DMG parent in the United States and would like your child to receive a Hugs from Hailey box, please complete our application form at the link below.

Want to donate specific items to our Hugs boxes? Check out our Wish Lists!

Walmart Wish List

https://www.walmart.com/registry/RR/12249147-83ea-4f7c-a30f-203c697ea700

Amazon Wish List

https://www.amazon.com/hz/wishlist/ls/3EKVPAHH08IB5?ref_=wl_share

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/