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The Children's Tumor Foundation brings you the Summer Edition of neurofibromatosis highlights from scientific papers published over the past couple of months, including a few from CTF-funded research!  To read the Summer 2010 Neurofibromatosis Research Roundup click here.

After writing yesterday's post on personalized medicine and genomics I was directed (hat tip to Garrett) to a special report on the human genome in the current issue of the Economist titled Biology 2.0.  Below are clips from the first page, but the entire article is well worth reading to understand where we are today in genetic research.

"TEN years ago, on June 26th 2000, a race ended. The result was declared a dead heat and both runners won the prize of shaking the hand of America’s then president, Bill Clinton, at the White House. The runners were J. Craig Venter for the private sector and Francis Collins for the public. The race was to sequence the human genome, all 3 billion genetic letters of it, and thus—as headline writers put it—read the book of life.

...And then it all went terribly quiet. The drugs did not appear. Nor did personalised medicine. Neither did the genetic underclass. And the money certainly did not materialise. Biotech firms proved to be just as good at consuming cash as dotcom start-ups, and with as little return. The casual observer, then, might be forgiven for thinking the whole thing a damp squib, and the $3 billion spent on the project to be so much wasted money. But the casual observer would be wrong. As The Economist observed at the time, the race Dr Venter and Dr Collins had been engaged in was a race not to the finish but to the starting line. "

The current articles on the human genome highlight the importance of the recent court decision on gene patents.   Genetic research is just getting started in leveraging the knowledge of the Human Genome Project.  It is our job as a foundation to ensure that NF research is front and center in exploring these new methods and technologies.

John

Last week there were several interesting articles on personalized medicine that are of interest to the NF community.  

The NY Times published a two part series headlined A Decade Later, Genetic Map Yields Few New Cures by Nicholas Wade, and Awaiting the Gene Payoff by Andrew Pollack.

It is difficult to argue that the expected benefits from  the Human Genome Project  have  met projections  made at the time of the projects completion in 2000.  In hindsight these expectations look overly optimistic.  However, as we look at the research landscape today and all the work that is being done, I can't help but borrow the baseball metaphor that we are only in the second inning.

Evidence of this is an article in Wired magazine about an announcment expected this Thursday of a joint project between 23andMme, the Michael J. Fox Foundation and the Parkinson’s Institute and Clinical Center to enroll up to 10,000 people with Parkinson’s Disease, get them genotyped using the 23andMe platform, and collect  phenotypic information. It is a long stated goal of the Children's Tumor Foundation to establish a patient registry and bio bank that will bring these capabilities to the NF patient and research community.  While we are not in a position to announce anything today, it is an area of key interest.  More to come...

John