Max's Ring of Fire supports the Neuroblastoma and Medulloblastoma Translational Research Consortium or NMTRC.

Based in Vermont but with core sites in San Diego, St. Louis, and Houston, this pediatric oncology research and translational medicine program's mission is to provide children with more precise, predictive approaches to treating advanced neuroblastoma and medulloblastoma.

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We need your DONATIONS to help us give researchers and doctors the tools they need. 100% of every donated dollar is guaranteed to fund meaningful neuroblastoma research and clinical trials NOW!

An ongoing inspiration for many people, Max was born on June 30, 2001. He was diagnosed with stage IV, high-risk neuroblastoma in October 2004. He whizzed through frontline treatment and by the following summer was effectively on the road back to a "normal" life - albeit with almost total hearing loss, a new immune system, and about 10lbs to gain back, all courtesy of Mr. Chemo.

Unfortunately, Max relapsed (as most high-risk NB patients do) in November 2006. Max fought bravely, entering a clinical trial in Vermont where he received nifurtimox in combination with other chemo agents. This combination diminished the disease until there was just one tiny spot still evident on his spine. But in February 2008 the beast came roaring back and we could never control it again, despite everything we tried. Max passed away on August 31, 2008 at 8:45pm in his mommy and daddy's bed.

Read more of Max's incredible fight.

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Monday
Jun152009

Journal of Participatory Medicine

DateJune 15, 2009 | Comments Off | | Print ArticlePrint Article

Many parents whose children are battling neuroblastoma practice what has become to be known as participatory medicine. A new peer-reviewed journal is being started and there are more than a few people I either know personally or a few that I am quite close with on its editorial board. I think this is a great thing for patients and caregivers facing fights against rare and life-threatening diseases. Many times the patient population is the largest generator and repository of data about a particular disease or disorder, and so it only makes sense that these "everyday scientists" working to save their own or a loved ones life be given the proper mechanism to publish their findings. I look forward to it's launch. Here is a good write up from one of the Journal of Participatory Medicine's founders.