OUR WORK
The Braden James Fund is designed to help families of DIPG-diagnosed children cope with the pain of this journey. To help them PLAY as kids for as long as possible, to help ADVOCATE for better access to critical care, and to support research for a CURE.
PLAY
Pediatric brain cancers, particularly DIPG, rob children of their childhood. The Braden James Fund works with hospitals across the country to improve the pediatric brain cancer patients’ quality of life. We endeavor to provide a creative outlet for kids and their families will ease the stress of difficult days in the hospital and challenging weeks at home.
Why does this matter? MRIs, brain surgeries, extended hospital stays, six weeks of radiation, and travel to seek care are just some of the critical, but incredibly disruptive and disturbing, experiences families and children must endure while battling DIPG.
With your support, we can help alleviate the stress and lessen the pain of DIPG-diagnosed children and their families by bringing some joy into their lives through play and art. You can help children remain children as long as possible.
To learn more about our work to improve children’s quality of life during treatment, read this article: Support for Children During Cancer Treatment.
ADVOCATE
Because there is no standard of care for DIPG beyond radiation, let alone a cure, the only access to potentially life-extending interventions is through clinical trials. Parents have to research dozens of clinical trials, determine their side effects, assess their effectiveness if any was to be found, discuss options with doctors, and then enroll. Braden was able to enroll in one trial before he began deteriorating. Once he lost some of his faculties, he no longer qualified for clinical trials which meant the only options for treatment were FDA-approved drugs. This is the same predicament every family impacted by DIPG must face.
While the system for accessing these trials has improved over the years with the hard work of many doctors and scientists, it’s still very difficult to enroll children. Furthermore, if a drug company receives emergency use authorization for a drug because it shows promise against DIPG in the laboratory setting, they may not have sufficient supply to make that drug available to patients outside of trial settings. In these situations, parents are left with essentially no options once their child has begun deteriorating - we believe this must change. The Braden James Fund advocates for families and children to gain improved access to trials and promising medications.
Support the Promising Pathways Act Today: If passed, the act will greatly expedite the provisional approval of drugs to treat terminal diseases like DIPG. To learn more and write to your legislators via the Musella here: supporting Promising Pathways Act.
CURE
Research into cures for pediatric cancers, particularly pediatric brain cancers, is severely underfunded (see below). Because of the comparatively small potential market for DIPG therapies, pharmaceutical companies invest very little in finding cures. Nevertheless, many doctors and scientists–including those who helped Braden–work tirelessly to find a cure. They must rely primarily on private donations to support their research. They need help. The Braden James Fund provides grants to hospitals, universities, researchers, and consortia working hard to find a cure for DIPG. Your donation will make all the difference for children such as Braden and their families.
The Braden James Fund is housed with our friends at the Arlington Community Foundation, a registered 501C3.
