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THIS CAME FROM DON C. REED VIA DIANE WHEN I WAS THINKING ABOUT PEOPLE WITH SPINAL CORD PARALYSIS, ALS, AND HUNTINGTON'S NOT HAVING TIME TO SPARE AND WAIT WHILE FOLKS ARGUE. RAY 265 Monday, December 11, 2006 - OF CURES, AND CHORES What do you do when everybody in the room is smarter than you-and they all think you're wrong? That has been pretty much the story of my life, ever since the nightmare began, September 10th, 1994, when Roman was injured on the football field, The doctors: "Your son will never walk again, never close his fingers, almost certainly never father a child." The Church: "Not only will we not do a fundraiser for Roman's therapy costs, but you should know you are going against God's will for your son." Organizer of spinal cord injury science conference: "This is a meeting for scientists to share information among themselves: if you keep asking questions, we're going to have to ask you to leave." (I did shut up, for a while. But at that same Asilomar conference, I asked a scientist what was her greatest need to advance the science? She answered in one word: money.) Conservative: "These people (paralyzed) did it to themselves, let them get themselves out of it." (He opposed spending tax bucks on research for cure.) Liberal: "This research (SCNT) will require millions of human eggs, and for no guaranteed benefit." For one of my columns supporting human embryonic stem cell research, "very bizarre. I don't know who Don Reed is." (this from a government official.) For a column supporting a scientist who believes in adult stem cell research: "You are. hero-worshipping." On my too-frequent comments at ICOC meetings: "You are making a fool out of yourself". From the woman who spat on me while I gathered signatures for Prop 71: "Hock-ptoooie!" Fortunately, being something of a blunt instrument, I am equipped to handle criticism, especially when the other person is a horse's BLEEPCENSORED. But when you really respect someone.? I had the good fortune to attend the grant review meeting for this year's Roman Reed Spinal Cord Injury Research Act money. Now, the amounts in question are nothing like the California Institute for Regeneration. They are dealing with millions, we are talking thousands. We have a total budget of $1.5 million a year. Next year, we will fight for more. But on this day the fight was over a very small pile of money. An average RR grant is only about $80,000. Even so, it matters. Because who knows which experiment will be the one that turns the key, opening the door to cure? And every once in a while, we strike gold. Like the Hans Keirstead experiments with human embryonic stem cells, which go to human trials next year. There were thirty grant requests. We could fund perhaps ten. But which ones? Several patient advocates are on the board. We could sit in, and listen and participate, but not vote. Around the table were nine scientists with long histories of spinal cord injury research for cure: They were: Dr. Henry Teitelbaum, Dr. Harry Goshgarian, Dr. John D. Houle, Dr. Robert J. McKeon, Dr. Philip G. Popovich, Dr. Jerry Silver, Dr. Jonathan S. Carp, and Dr. George M. Smith. These are men to respect. They knew they were in the presence of lay folk, myself, Karen Miner, Fran Lopes, and Susan Rotchy, and at first they made an effort to talk people talk for our benefit. But gradually they relaxed and chatted as scientists do, the intellectual shorthand common to every specialty. Like conversational Latin: nice if you speak it, but if you don't.. Like my Dad, Dr. Charles Reed is 85 now, and his hair is still jet black, while his son's is mostly white. My wife's family was discussing this hair coloration phenomenon-in Spanish-but they did not know my Dad is linguist who can communicate in seventeen languages... He answered them (in Spanish) that yes, he did indeed tint his hair. So there we were, Karen and Susan and Fran and myself, struggling to understand the scientists. The decision would be based on a score: from one to four points, with one being wonderful, and four being no chance. Two reviewers had studied the proposal, gave it a grade, and discussed their reasons for the score, after which the other scientists would agree or not. One person I did not have to worry about, I was sure, was Dr. Keirstead. His earlier work had been overwhelmingly successful (which pride compels me to mention was initially funded by the RR Act) including the famous rats that walked again after human embryonic stem cells, which was going to human trials next year, the first clinical trials.. Now he was trying another experiment, based on work done by Dr. Doug Kerr of Johns Hopkins, but with a different "vector" (way to deliver the improvement factor) and with ultra-pure embryonic stem cells. I figured there would no problem there. Not to approve Hans Keirstead? Other proposals came first. Among them: a request for more funding for a wonderful advancement on the Petri dish, designing it for stem cell research; several proposals for assisted therapy like treadmills; one wonderful and purely practical attempt to locate and test drugs already on the market for other purposes; one to try and set up a brain-computer interface; studies of nerve growth and how it might be influenced chemically; a really interesting idea of using salmon as a matrix (the gel in which stem cells grow); --and all the while I was waiting for Hans Keirstead's project, titled: Human Embryonic Stem Cell-derived Motor Neurons for the Treatment of Chronic Spinal Injury. "CHRONIC"..that is huge-that's everybody who has been injured with a spinal cord injury for more than a few days. The reviewing scientists presented their evaluation of the various projects, saying this one was outstanding, plenty of prior research backing up the idea, but that one was too ambitious, and the other was questionable - not enough data given. One of the reviewers said of a project, that rejection was no big deal, they could just come back next year and try again. And Karen cleared her throat and said: "For some, there is no next year." That brought us back to grim reality: research is not theoretical discussion. Debate was.vigorous. Some of the scientists whose work was being discussed, would not have enjoyed what was said, which was why they were not there. Sometimes, scores were changed, up or down, but usually not. These were top people, with long years in the lab. Mostly, I agreed with the scientists' reviews. I did like the idea of a flexible exo-skeleton which would provide support for a paralyzed person learning to walk again, but the reviewers felt there were too many complications. But I understood only one in three projects could be funded, which meant some very good research would not go forward. And then at last it came, the one I was not worried about. Hans Keirstead's work, the only hESC project, to make the big motor nerves that run the length of our arms and legs, for chronically paralyzed people-this is probably his most important work ever. I was so proud the Roman Reed Act was going to be the first to fund it. But when the reviewers' scores were read, I could not believe what I was hearing. The scores were: 2.3 and 2.6, too low to be funded. What? Did my ears deceive me? He is trying something too difficult, it was explained. The money should go to someone with a more accomplishable goal. I looked at Karen, just out of the hospital, pale, too thin, but here nonetheless. She frowned, and shook her head. And the fight began. For forty-five minutes, we argued. I have never felt such a weight of responsibility: that I must be at my best, and fight successfully. It was no good to make a noble effort and fail. We had to win. Even if I lost the friendship of every person in the room, that research had to go forward. I talked, and talked, and talked. I shouted, whispered, pleaded. My ears rung, I was sick of the sound of my own voice, which seemed to echo in my head. But at the end, a scientist said: "This is not the NIH. This is the Roman Reed Act. Maybe it is a good thing, we take a risk." The score was changed-- to 2.0. The Keirstead research will be funded. So what is the point? We dare not leave the fate of stem cell research to somebody else. There is no somebody else, just us. In the next two years, there will be battles too huge to lose. We cannot wait until 2008 and hope for a more supportive President, and some more anti-research legislators to be defeated. Here we stand, here we fight. HR 810, the Stem Cell Research Act, is right around the corner, just a couple weeks ahead. That is a must-win situation. Tell your friends; remind the neighbors. If we want the cures, we must be there for the chores. By Don C. Reed, Chair, Californians for Cures, www.stemcellbattles.com. Email Don at: [log in to unmask] TIME's Person of the Year is the person or persons who most affected the news and our lives, for good or for ill, and embodied what was important about the year. Let them know how important a Democratic Congress and Speaker Pelosi is - as the First Woman Speaker in the history of the U.S.! Show your support of California's own Nancy Pelosi and cast your vote today. (http://www.time.com/time/personoftheyear/2006/walkup) An invitation to join my new Yahoo Group, the Daily Kos Stem Cell Supporters Group. http://groups.yahoo.com/group/DailyKosStemCells/ Please send this around to folks who support stem cell research, i.e., friends, neighbors, loved ones, bloggers, activists, and almost everyone you can think of. Thanks! Miriam, Member, Democracy for NYC ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn