Hope from Hailey
Cancer is the leading cause of death by disease in children. Brain cancer kills more children than any other cancer type, and Diffuse Intrinsic Pontine Glioma (DIPG) is the deadliest form leading to approximately 50% of those deaths. DIPG is considered terminal at diagnosis, with a median survival time of just 9 to 11 months. But there is hope. Researchers are gaining a better understanding of these tumors, targeted therapies are being developed, and new clinical trials are helping to push the needle and extend survival times. The poor prognosis will only continue to improve with more research.
Our Hope from Hailey program raises funds to support DIPG research so that effective treatments - and one day a cure - will be found.
We fund research in two ways. First, we have established Princess Hailey's DIPG Research Fund at St. Jude Children's Research Hospital, where she received most of her treatment, to support their efforts to combat this devastating disease. Second, we have joined the DIPG/DMG Research Funding Alliance (DDRFA), in which we partner with 50+ foundations and families to leverage resources and fund critical DIPG/DMG-specific research grants. Grant proposals are submitted by researchers in the Fall and Spring and are reviewed by the Medical Advisory Council prior to the commitment of funds. Since June 2022, DDRFA has funded more than $2.5M in grants and $600K in tumor board support and we are proud to be a contributing member (https://ddrfa.org).
In Spring 2023, our organization helped to fund Dr. John Ligon's project entitled, "Impact of RNA Nanoparticle Vaccine on Immune Response to DIPG DMG" (University of Florida). In Winter 2024, we committed funds to Dr. Jasper Van der Lugt's project "Gut Microbiome Signatures of DIPG/DMG Patients Enrolled in PNOC022 Protocol," which examines the role of the gut microbiome in patients' response(s) to treatment (Princess Maxima Center for Pediatric Oncology). The results of this research have the potential to support the hypothesis within the PNOC022 trial that changes in the microbiome can serve as predictive markers for clinical outcomes in pediatric DMG. In June 2024, we made our first $10,000 commitment to Princess Hailey's research fund at St. Jude.
There is so much more to do and kids diagnosed need our help. Help bring HOPE to kids in the fight by donating today.
Hops from Hailey
When a child is diagnosed with DIPG, treatment options are extremely limited. The standard of care for a child diagnosed is typically 30 rounds of photon radiation. While these radiation treatments are palliative in nature, 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 chose to enroll their child in a clinical trial. While trial medications and treatments are experimental in nature, 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 75 miles away from their homes to help offset the cost of travel to their child's treatment center.
This is a new grant-funded program and 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 be in touch with you via e-mail to coordinate the delivery of your gift card.
Hugs from Hailey
While Hailey was battling DIPG, she looked forward to receiving mail and being able to visit the "happy cart" on clinic days. Often times, a special toy 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 who are battling DIPG/DMG to encourage them to keep fighting and send treats and toys to 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 is through social media and through our hospital contacts. But, if you are a DIPG/DMG parent in the United States and would like for 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
Images of Impact: A Few Hugs from Hailey Recipients
National DIPG/DMG Brain Tumor Board Support
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/
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