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• W3023335097 abstract "September 10, 1994. Gloria and I were watching our son, Roman Reed, playing his usual outstanding game of football for the Chabot College Gladiators. As a middle linebacker, he had been going one-on-one with a giant 341-pound blocker all night long. Sometimes Roman faded like smoke and went around to make the tackle; sometimes they crashed together like trucks. And then, as Gloria shot video and I took notes, Roman dived in one more time. Above the shock and click of shoulder pads colliding, there was an ugly noise, like a stick breaking, as our son disappeared under a pile of helmeted bodies. The whistle blew. One by one the athletes disentangled themselves from the pileup and ran lightly from the field. All but one. “Don’t worry, Mom,” said Roman, when everyone was gathered around him, as he lay there so still on the grass. “I can’t feel a thing.” At the hospital they told us Roman’s neck was broken, a fracture of the 5th and 6th cervical vertebrae; he was paralyzed from the shoulders down. A metal plate was inserted to prevent further damage. One doctor gave us a chilling prognosis: “Your son will never walk again, never close his fingers, and almost certainly never be able to father a child.” Roman told him to get out of the room. He refused to accept the doctor’s opinion, and had a banner made: “I can, I will, I shall!” “This is just temporary, Dad,” he told me, one dark night in the hospital. “We will get through this.” If no one had ever been cured of paralysis in the history of the world—well, that just meant that somebody had to go first! A pro football player, New York Jets linebacker Dennis Byrd, had been similarly injured. But Dennis Byrd walked again. He had been injected with Sygen, a substance made from dried cows’ brains, immediately after his injury. He was not cured, but he was better. A clinical trial with Sygen was going on. We tried to enroll Roman, but we missed the entry deadline by one hour. Could we get the medication on our own? I located the scientist (Fred Geisler of Chicago) who invented the drug. He said it might still work, even after the entry time prescribed, and was available from Switzerland. With a doctor’s prescription and a loan on the house, we began the procedure. Six months of heavy-duty therapy and several hundred injections later, Roman had recovered full use of his triceps muscles, and could drive an adapted vehicle. Was it the Sygen that helped him, or the therapy? To this day, I do not know. Gloria had the house remodeled for wheelchair living. She founded a group, the “Ps and Qs” (Paraplegics and Quadriplegics) for parents who knew the struggle and could share practical techniques, such as how to navigate insurance battles. I thought that was everything we could do. But Roman had no interest in giving up. He would not quit, and he would not let me stop either. Could we get the government to fund research to cure paralysis? As the writer of the family, I contacted (literally) every Congressman and Senator in Washington, as well as our local assemblyman, John Dutra (D-Fremont). No one showed interest—until Dutra called me at Horner Junior High School, where I taught English. Would I mind, he said, if they named a bill after my son—calling it the Roman Reed Spinal Cord Injury Research Act of 1999? Would I mind? I screamed and pounded the wall, then ran to the office, got on the intercom, and told the whole school what had just happened. They had no idea what I was talking about, but gathered I was happy about something. That was the end of it, I thought. I could hardly have been more wrong. There were multiple committee hearings at the state Assembly and Senate, all of which had to be passed individually, plus the final votes in each chamber—when then had to be approved by the Governor. On the internet I met wheelchair warriors like Karen Miner, Fran Lopez, and Susan Rotchy. We were inspired by advocate legend Ed Roberts of Berkeley, responsible for curb cuts being put into the streets for wheelchair access—but first he had to invent a way to make his iron lung portable, so he could leave the hospital.“Advocate as if your life depended on it, because it does.” —Ed Roberts Advocacy, that was the answer; to mobilize those with a reason to care: like the families of the one American in five who has a disability. At last our bill was approved by both houses of the California Congress, and Governor Gray Davis signed on the dotted line. “Roman’s Law” had begun. It was only a million dollars a year, later increased to one and a half million, not much perhaps; but it meant scientists like Hans Keirstead could now receive small research grants—one of which led to the nation’s first embryonic stem cell therapy. On March 1, 2002, the official laboratory of the Roman Reed Spinal Cord Injury Research Act was opened, to be overseen by Dr. Oswald Steward at UC Irvine. A paralyzed laboratory rat named Fighter was given an injection of stem cells into her spine—and she walked again. Instead of miserably dragging her hindquarters, she scampered, tail high, across the purple plastic swimming pool play area. I picked her up and held the formerly paralyzed rat in in my hands, feeling the tiny muscles struggling to be free—and this while Roman sat in his wheelchair, a few feet away. It was like touching tomorrow. “You can put her down now, Dad,” my son had to tell me. Christopher Reeve, the paralyzed movie “Superman,” spoke to us over speaker phone, saying, “Oh, to be a rat this day!” My wife Gloria got so excited—she photographed the phone! The Act dispensed 15 million California dollars, also attracting “add-on” funds of roughly $87 million from other sources, like the National Institutes of Health (NIH) and the Christopher and Dana Reeve Foundation. But that was couch change compared to the need. Estimates of the number of paralyzed people run as high as five million. The only way Roman had a chance to get better would be if the whole field of regenerative medicine moved forward. But how? I worked as a grassroots coordinator with Senator Deborah Ortiz (D-Sacramento) as she passed America’s first stem cell legislation, Senate Bill 253. But there was a problem. SB 253 contained no funding: no dollars for research. Enter Bob Klein, a real estate developer in Palo Alto, California, and the father of Jordan, a young man with Type 1 diabetes. Do you remember the U.S. invasion of Iraq? Right before it happened, President George W. Bush said he would not consider any more legislation, unless it was supported by both sides, 100%, every Republican and Democrat—impossible, right? Klein and the Juvenile Diabetes Research Fund (JDRF) organized a massive telephone campaign, asking for (and receiving) every Senator’s vote. The President signed the legislation—authorizing $1.5 billion in federal funding to fight diabetes. Later, an advocate came to Bob and asked him: would he try again and raise another billion—for stem cell research? “No,” said Bob. “Too much?” the advocate asked. “Not enough,” said Bob. “It has to be at least $3 billion.” Always before, Roman and Karen and I had operated with the perfect freedom of a zero budget. We could do anything, as long as it cost no money. Now, there was an actual budget. My first day aboard, there was a pizza-eating meeting, after which I cut up cardboard boxes, backing for the signature gatherers. I went home with a bloodblister on my thumb and joy in my heart. “Let’s send a message,” said Bob. “Let’s gather one million signatures.” The patient advocate community responded. In his power wheelchair, Roman gathered signatures. Gloria and I would stand in front of stores until the managers kicked us out. We learned to be brief, just eight words per person. “Do you support stem cell research?” If they said yes, we said, “Sign here.” If they said no, we moved on. Once an old lady read my sign, “Put stem cells on the ballot.” She waited her turn in line to talk to me—but instead of offering conversation, she spat on my shoe. The campaign hired a security guard after a pipe bomb incident at a stem cell research facility in New Jersey. The Reed family gathered about 2,000 signatures—but another advocate family, the Kaplans, brought in five times as much. Usually, in an initiative involving money, support in the polls begins high and then goes low. Ours started off in a near tie: 45% yes, 43% no—not much margin. But it grew.“Every American family deserves the best medical treatment science can provide.” —George Lakoff, UC Berkeley We gathered support wherever we could, sometimes in surprising places. When Arnold Schwarzenegger came aboard, there were some jokes about The Terminator, but he defended stem cell research ably, as did Sherry Lansing, recipient of the Jean Hersholt Humanitarian trophy at the Academy Awards. Officially, the Catholic Church opposed Proposition 71, the California Stem Cells for Research and Cures Act. Priests voicing that political stance were sent to the parochial school my grandson attended. But a group called Catholics for Choice supported us, and a poll showed 72% of Catholics themselves supported early stem cell research, using biological materials that would otherwise be discarded. When the final vote came, it was decisive: 59.1% of the voters said “Yes!” in support of the $3 billion stem cell program. The California Institute for Regenerative Medicine (CIRM) was born. There were still curves ahead, of course. Frivolous lawsuits (including one from “Jane Doe,” a fictitious embryo) blocked our research for nearly 3 years. But Bob Klein found a way. People could loan money to CIRM so it could get started—and if the lawsuits went against us, the money would be considered a donation to research. Imagine going to a bank and asking for a loan—that you might pay back. Bob raised about $40 million that way. (It was later repaid in full, with interest.) And there were other fights to occupy us, in national and international arenas. Trying to protect embryonic stem cell research on a national basis, the bipartisan House Resolution 810 (Castle/Degette) passed both houses of Congress, twice, before President George W. Bush vetoed it—both times. Under pressure from patient advocates and their friends in Congress, President Bush did allow a very limited number of embryonic stem cell lines to be used for research. But there would be no more after that, ever, he said. In the United Nations, Bush’s emissaries tried to pass a world-wide law banning therapeutic cloning (copying cells that might heal wounds), lumping them together with the universally opposed reproductive cloning (copying people, never done).The California Institute for Regenerative Medicine (CIRM) was born. We found an email address that reached every U.N. ambassador, and contacted them all, again and again. The anti-research ban passed—but in a toothless form, voluntary. Jumping ahead to March 9th, 2009, the advocates went to Washington—Roman, Gloria, Bob Klein, and I—and cheered ourselves hoarse, as President Obama, a friend of science, reversed the Bush stem cell restrictions. And one glorious day in 2007, I had the honor of delivering the patient advocate’s acceptance speech as Governor Schwarzenegger loaned CIRM $150 million, enough to get well and truly started. The CIRM was open for business. How did it work? Every grant proposal was evaluated by scientists drawn from an out-of-state pool, the Grants Working Group. Then, CIRM’s in-house scientists would go over the thinned-out proposals. They could recommend but not decide. The proposals would then be offered at a meeting of the CIRM board of directors, the Independent Citizens’ Oversight Committee (ICOC). Members of the public could speak. I have probably taken advantage of that more than anyone else. If I liked a proposal, I would write out a 3-minute speech and babble away in support of it. I have done this dozens of times; sometimes I won, sometimes not. But what an opportunity—to influence a decision on millions of dollars of research funding. Even after the funding was allocated, the FDA approval process was and is lengthy and difficult. For instance, the stem cell procedure begun by Roman’s law has involved more than 20,000 pages of correspondence and 18 years of testing. The process is slow and careful, necessarily; above all, no one must be made worse. Researchers faced a mountain of difficulties; every disease or disability being challenged was a chronic condition: “chronic” meaning long-lasting or incurable. For instance, the world’s first mention of paralysis was written in hieroglyphics on the walls of an Egyptian tomb. Of paralyzed soldiers, it said, “Deny them water, let them die; there is nothing that can be done.” For centuries that was the general opinion, that cure was impossible. But today, paralyzed people have recovered upper body function after CIRM-assisted clinical trials, using embryonic stem cell procedures pioneered by Roman’s law. And that is just one example of the chronic diseases CIRM is fighting, step by careful step: heart disease, diabetes, cancer, stroke, leukemia, and much more. The size of the problem is staggering. Last year alone, 2019, America spent almost $3 trillion on chronic disease—stacked in dollar bills, that pile would reach the moon—but all those federal dollars do not cure suffering people; they just maintain them in their misery. We need cure, not just endlessly expensive care. Yet change may come. Let me tell you a story. (And note that this story is used with permission.) At last year’s meeting of the International Society of Stem Cell Research (ISSCR), I had dinner with the Vaccaro family, including their lively 7-year-old daughter, Evie, engrossed in a game of Battleship with a scientist. Evie was losing and did not seem too happy about it. It was an accident, I am sure, when she spilled her milk on the scientist’s shoes. Why does this matter? Do you remember a John Travolta movie called, “The Boy in the Plastic Bubble”? A young man had a disease, Severe Combined Immune Disorder (SCID), which meant that he had no functioning immune system. It was a death sentence. Germs the rest of us ignored could kill him. He lived in a sterile world, behind a wall of plastic sheeting. In the end, he seemed to get better, and rode off on a horse with his girlfriend. In real life, the young man died. His name was David Vitter, and I spoke with his mother. That little girl, Evie, had also been diagnosed with SCID. But her parents had the good fortune to cross paths with Donald Kohn of UCLA. Their child was able to join his clinical trial. Today, she can run around outside, happy and healthy. The CIRM-funded stem cell/gene therapy procedure literally cured that little girl—and 50 more like her. That same “remove, repair, replace” procedure—remove bone marrow, repair bad genes, replace with the aid of stem cells—might also be used to fight a devastating disease, sickle cell anemia. Tests are now being done to see if this is possible. There was more, much more. When CIRM began, one scientist warned us not to get our hopes up, saying we would be lucky to bring even one stem cell product or procedure all the way to clinical trials to be tested on human beings. CIRM has 82 human trials, completed, ongoing, or shortly to commence. On August 22, 2018, I and other advocates spoke before the California Assembly Select Committee on Biotechnology, urging the continuation of this great program: “Today, thanks to the 7.2 million voters who authorized the California Institute for Regenerative Medicine, or CIRM, we have something better than hope; we have results, accomplishments, people made well—and a systematic way to fight chronic disease.” Bob Klein had advice on the value of partnerships and how they could move research advancements: “It is critical for patient advocates to befriend a scientist working in the field of their condition. If the public hears a scientist ask for funding, they may think he/she is acting out of self-interest. But when a patient backs them up, the seriousness of that scientist’s commitment becomes clear.” Today CIRM’s funding is almost gone. California must decide to renew the program with new funding—or sit idly by and watch it die. As this is written, Gloria Jean, my beloved wife of 50 years, has just died of pancreatic cancer. It was a difficult parting. And one of the last things she said was, “The stem cell research must go on. No one should have to suffer like this.” With every fiber of my being I want that wish to come true: that our state will extend the program’s funding with an additional $5.5 billion. California’s voters should be proud of what their vision has accomplished. They should look closely at what has been done already, and how close we are to so much more. Bob Klein is still leading the effort to advance regenerative medicine, though tragically his son Jordan has died of complications to diabetes. And Roman? It has been 25 years since his accident, and he is still fighting. Defying the doctor’s predictions, he has three children: Roman Jr., Jason, and Katherine. The RR Act was renewed by Governor Schwarzenegger and passed unanimously by the Assembly and Senate. Unfortunately, it was vetoed twice by Governor Brown, for reasons not clear. Roman will doubtless try again with the help (we hope!) of Governor Gavin Newsom. Roman has helped other states set up similar paralysis research programs, like the T.J. Atkinson Act, in Alabama. We have not quit. It is my hope that Roman will fulfill the great prediction made by Christopher Reeve, who said, “One day, Roman and I will stand up from our wheelchairs and walk away from them forever.” Cure did not come in time for the paralyzed Superman, but the flame of his faith still lights our way. We will, as he said, “Go forward!”—and we will prevail." @default.
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