EVENT: 2017 Amica Newport Marathon
-All donations go to THE URBAN PEDIATRIC CANCER RESEARCH FUND at Hasbro Children's Hospital-
In February 2013, our 21-month-old son Connor, was diagnosed with an extremely rare and aggressive brain cancer (known as Choroid Plexus Carcinoma). His outlook wasn’t favorable, but our incredibly talented neurosurgeon, at Hasbro Children’s Hospital, gave him the fighting shot he needed. With all but a small portion of the tumor removed, we thought there was reason for optimism. But with the post-surgical pathology results, came the crushing official diagnosis and the revelation of a world we never knew existed. Immediately, we found ourselves immersed in a crash course on the alarming funding crisis plaguing childhood cancer research, and how shockingly limited Connor’s treatment options were, as a result.
We learned that most pediatric cancer types are genetically unique compared to adult cancers, and subsequently require very different treatment methods/medications. To put it simply, kids need their own funding and don’t benefit much from adult research. Unfortunately, as a nation, we have all but abandoned kids with cancer. Of the entire federal budget for all US cancer research, less than 4% is allocated to childhood cancer types, while over 96% is dedicated to adult cancers. Drug production and clinical trials are almost non-existant and pediatric oncologists/children’s hospitals are forced to do the best they can, with extremely limited resources. In 30 years, the FDA has only approved 3 new drugs for childhood cancers. Rare types like Connor’s don’t generally mean good news is on the horizon. And even when kids do survive, most suffer debilitating physical trauma from the brutally toxic and outdated medications. On average, chemotherapy agents used in pediatric cancer protocols haven't changed in 30 years. 2/3rds of all childhood cancer survivors suffer serious chronic or life-threatening side effects, as a result of those treatments (including secondary cancers in some cases). It’s a terrible cycle that the general public seems to know very little about.
Bordering on miraculous, our son was the benefactor of an incomprehensible series of fortunate circumstances. Despite the rarity of the cancer type, our Hasbro oncology team discovered a study and clinical trial, with German origins. With roughly 50 cases documented globally, the likelihood of a dedicated protocol was unheard of for cases like Connor’s. But amazingly, our team found one. Within a few days, (in collaboration with another Boston-based children’s hospital) Hasbro initiated a protocol approval process, eventually granting Connor access to the improbable trial, which ultimately saved his life.
The almost miraculous nature of our happy ending isn't lost on us, nor is the importance Hasbro Children’s Hospital and its fabulous staff have played. We believe that our incredible fortune carries an inherent responsibility to spread awareness and educate our peers about the realities of pediatric cancer. Childhood cancer research funding is crucially important to hospitals like Hasbro Children’s, which is why we have established the Urban Family Pediatric Cancer Research Fund. We ask you to consider a donation and to share our message. Awareness is the first step toward change. Please help us be a catalyst for change. Thanks so much for your support and consideration!