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

The Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) is a group of 18 universities and children’s hospitals headquartered at the Helen Devos Children’s Hospital that offer a nationwide network of childhood cancer clinical trials. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma.

Their mission is to create a national collaborative effort of researchers, oncologists and family advocates to bring forward new therapies for children with relapsed neuroblastoma and medulloblastoma with the goal of improving the quality of life and survival of children with 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
Nov282011

Creating Hope in San Diego (and how you can do it)

Jacob's mom, Nancy Goodman, of Kids V Cancer and the force behind the Creating Hope Act, speaking with Representative McCaul before the Childhood Cancer Caucus and introduction of the Creating Hope Act in the House September 23, 2011.Did you know that when Max was treated with chemotherapy, many of the drugs that he was administered were first developed in the 50's and 60's? And while some of them were effective, there was a tremendous cost to their benefit, since the drugs were extremely toxic and only effective in large doses. This is true across all childhood cancers - the "wonder drugs" available to adults are, sadly, largely unavailable to children. And little effort is going in to developing new drugs for kids fighting cancer.

The Creating Hope Act, designed to address this drug development imbalance, was introduced in the House on September 23 to great success. There are now 86 sponsors and a lot of momentum. The goal is to get to 100 sponsors by December 8!

How does the Creating Hope Act work? It provides private market incentives for development of drugs for pediatric rare diseases through the extension of the priority review voucher program to children with rare diseases. The Act is cost neutral – it does not require any appropriation (ie, new funding). It is a freebie!

In San Diego, two Congressional Representatives have already signed on to co-sponsor the Creating Hope Act: Brian Bilbray (50th) and Bob Filner (51st) - thank you!

Representatives Darrell Issa (49th), Duncan Hunter (52nd), and Susan Davis (53rd) have not yet indicated their support of this cost neutral, ground-breaking legislation.

Here's what we are asking you to do: 

(1) If you're unsure if you are in the 49th, 52nd or 53rd district, check out this San Diego county Congressional District map.

(2) If you are in the 49th/52nd/53rd Congressional districts, click here to fill out a letter and have it sent directly to your Congressional Representative. You do not need to be a parent of a child affected by cancer, or even know someone personally affected by childhood cancer. All you have to be is someone who thinks that children deserve to receive better, less-toxic drugs just like adults.

It only take a few minutes to do this, and hearing from constituents is a very effective way that Congress decides which bills it supports, and which it doesn't. If you are interested in doing more, including calling the legislative assistant who oversees health policy matters for Representatives Issa, Hunter or Davis, please contact us and we'll follow up with you immediately.

Thank you for your help!

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