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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Sunday
Jun282009

Not Playing It Safe

(image by rosiehardy)

A must-read article in (today's) June 28th New York Times titled "Playing It Safe in Cancer Research" lays out exactly the reason why patient-driven research is so important. In the article by Gina Colata, the federal NIH and NCI granting process is described as a, "jobs program, a way to keep research laboratories going year after year with the understanding that the focus will be on small projects unlikely to take significant steps toward curing cancer."

“These grants are not silly, but they are only likely to produce incremental progress,” said Dr. Robert C. Young, chancellor at Fox Chase Cancer Center in Philadelphia and chairman of the Board of Scientific Advisors, an independent group that makes recommendations to the cancer institute.

We must find and fund the "cutting edge" ideas that are out there. We need to not be afraid of failure. The process and people that make the decision on what projects receive federal cancer research dollars "are timid about taking chances on ones that might not succeed."

This risk-adverse approach isn't limited solely to the federal government. You might be thinking, "that's the federal government, we know they aren't the solution. That's why the American Cancer Society plays such an important role - to fill the gaps the federal and state governments don't fill."

Wrong.

"The private American Cancer Society follows a similarly cautious path" according to the article. In fact, the chief medical officer at the cancer society, Dr. Otis W. Brawley, says himself, "No one wants to fund wild new ideas."

Wrong again.

Think of the government and large non-profits like ACS as you would think of a bank if you were a business looking for capital to start or expand your business. Then think of parent/patient-driven research foundations as venture capitalists. Of all the innovative companies that have revolutionized our lives in the last 30 years, how many do you think got critical funding early in their development from banks, and how many from VC's? Think of the Cisco's, Google's, and Apple's of the world. All companies that have revolutionized the world in which we live, and all who received their funding from those who believed in their vision, were willing to take a risk, and who knew that they would never succeed if they were afraid of failing. Without funding organizations that are willing to take similar risks, we will never experience a cure for cancer in our lifetime.

Patient-driven foundations help fund those "wild new ideas" that the government and ACS are unwilling to take chances on. Those "wild new ideas" that just might change the game for kids fighting neuroblastoma. Another innovative foundation that receives significant support from a prominent Silicon Valley backer of companies like eBay and AOL says its applicants "have to prove their idea is so far off the beaten track that nobody else will take a chance on it."

There is a choice that you can make when it comes to who you give to when you give to help try to find a cure for cancer - a choice between status quo and possibly game-changing.

We're not afraid to swing for the fences.