=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #844 (28 April 2001) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Stem-Cell Advances are Likely to Heighten Ethics Debate 2 .. Medved's 5K Race to Cure ALS 3 .. An ALS Progression To Glory : Poem 4 .. re: Intrathecal Gamma Globulin treatment 5 .. ALS questions from Italy (1) ===== Stem-Cell Advances are Likely to Heighten Ethics Debate ========== Date : Fri, 27 Apr 2001 >From : Mariza Costa-Cabral Subject: The following article is taken from the April 27 on-line edition of the New York Times: http://www.nytimes.com/2001/04/27/health/27CELL.html Stem-Cell Advances Are Likely to Heighten Ethics Debate By NICHOLAS WADE Scientists report two major advances today in the concept of using embryonic cells to regenerate human tissues, results that are expected to sharpen the clash between advocates of biomedical research and opponents of abortion. The advances come as the Bush administration, facing intense lobbying from the two sides, is reviewing the Clinton administration's proposal to let government-financed scientists proceed with the research. In one of the reports, biologists at the National Institutes of Health used mouse embryonic stem cells to generate insulin-producing organs resembling the islets of the pancreas, a feat that holds promise for treating Type 1 diabetes, also known as juvenile diabetes. In the other report, Rockefeller University biologists have proved in principle, though only in mice, the strange and once futuristic concept known as therapeutic cloning. The idea is to take an ordinary skin cell from a patient, convert it into an embryo and use the embryo's cells to repair any desired tissue of the patient's body. The embryo is destroyed in the process. In this case the Rockefeller researchers chopped a tenth of an inch off the tails of mice and converted the tails' skin cells into embryonic stem cells. Colleagues at the Memorial Sloan-Kettering Cancer Center then made the stem cells morph into the dopamine-producing cells of the brain that are lost in Parkinson's disease. Both studies are published in today's issue of Science. The studies bolster hopes for a novel form of therapy referred to as regenerative medicine. Embryonic stem cells, taken from an embryo a few days old at the stage when it is a barely visible, hollow sphere of cells, are expected to play a central role in regenerative medicine since these powerful cells give rise to all the tissues of the adult body. Probably as a defense against cancer, the body's adult cells are kept under tight leash and cannot divide very much or change into different types of cells. This constraint severely limits the aging body's ability to regenerate its organs and tissues, even though the information to do so still resides in every cell's genes. But embryonic stem cells should be able to generate all medically desired new tissues, once biologists can find the right natural signals to coax them into any desired cell type. Though human embryonic stem cells were first obtained in 1998, almost all work on the cells is being done in mice, in part because federal financing for work on human embryonic cells has been in abeyance because of objections by abortion opponents, and in part because the mouse is a quicker and more practical test bed for working out the new principles. Today's work with pancreatic cells, conducted by Nadya Lumelsky, Ron McKay and others in Dr. McKay's laboratory at the National Institutes of Health, lays the basis for a novel treatment of Type 1 diabetes, a disease in which the pancreas fails to produce insulin. The researchers devised a novel procedure for driving mouse embryonic stem cells down the particular line of development that leads to a pancreatic precursor cell. These precursor cells formed at least four types of pancreatic cells, including those that secrete insulin and two other hormones known as glucagon and somatostatin. The different cell types then combined with each other in much the same architecture as do cells in the islets of the pancreas. This seems to be the first time that a miniature organ has been coaxed to form from embryonic stem cells, proof that in the right circumstances the body is a self-assembling system. The islet-like structures produced insulin when exposed to glucose. When injected under the skin of diabetic mice, they induced the body to build a blood supply to them and enabled the mice to live longer. They did not produce enough insulin to cure the mice; Dr. McKay said more work was needed to mature the cells. Last year Canadian researchers reported that transplants of human islet cells from donor organs had freed eight patients from the chore of daily insulin injections. There are not enough donor organs to treat the 16 million Americans who suffer from Type 1 diabetes. But if fully functional, islet-like structures could be generated from human embryonic stem cells, supply would not be a problem. Dr. Lumelsky is trying to replicate the mouse work in human cells. Because researchers cannot use federal money to work on human embryonic stem cells, she has moved to the Harvard laboratory of Dr. Douglas A. Melton, who studies the cells with support from the Howard Hughes Medical Institute. Dr. Melton said it was a burden, not a privilege, to be one of the few researchers able to work with human embryonic stem cells. "A result like Ron McKay's makes one see what kind of potential is going to be shut off by not funding this research," Dr. Melton said. "This is such an exciting area, not just for diabetes but for many other diseases, that rather than limiting the funds, one should aggressively pursue a line of research that holds such enormous promise." Similiar frustration was expressed by Dr. Robert Goldstein, chief scientific officer of the Juvenile Diabetes Research Foundation. He said his organization was "very distressed," both that the large and expert corps of government-financed medical researchers were unable to work on the cells, and that the research now legally proceeding in the private sector lacked the benefit of public oversight. "Our magnificent biomedical research enterprise won't be working in this area, Dr. Goldstein said. "We think that is very unfortunate." Abortion opponents object to the fact that embryonic stem cells are derived by destroying embryos and advocate using a different class of stem cell, known as adult stem cells, which are found in various adult tissues. But adult stem cells are less versatile; none can yet be converted into the tissues needed to treat diabetes and Parkinson's. Today's other report proves that therapeutic cloning works in mice, although the researchers have yet to inject the dopamine-producing cells they created into the brains of mice with Parkinson's disease to see if symptoms are relieved. The creation of mouse embryonic stem cells from mouse skin cells was carried out by Dr. Teruhiko Wakayama and colleagues in the Rockefeller University laboratory of Dr. Peter Mombaerts. Dr. Lorenz Studer at Sloan-Kettering converted the embryonic cells into brain cells. But to take therapeutic cloning from mice to people will not be simple. The mouse skin cell is converted to embryonic form by removing its nucleus and inserting it into a mouse egg whose own nucleus has been removed, the same process that was used in cloning Dolly the sheep. This egg is allowed to develop for a few days in glassware until it is a hollow sphere of some 120 cells. From these cells, which would form all the tissues of the mouse's body, embryonic cells are derived. The same process in people might require a human egg cell to reprogram the skin cell nucleus. The embryo thus created could in principle be brought to term if inserted in a uterus, a procedure that would lead to cloning the person. Under therapeutic cloning, however, the embryo would instead be destroyed in order to create embryonic stem cells. Therapeutic cloning with human cells has been approved in Britain but in the United States it would not be permitted for researchers financed by the National Institutes of Health, even if the Bush administration were to let research with embryonic stem cells proceed. (2) ===== Medved's 5K Race to Cure ALS ========== >From : DGreen4156@aol.com Date : Fri, 27 Apr 2001 Subject: Join us on Father's Day, June 17th, here in Rochester, NY, for a 5K run and (simultaneous) 1 Mile Walk to raise ALS awareness and research. The Race Place: Frontier Field Race Time: 8:30 AM sharp! Run Distance: 5K (3.1 miles) very FLAT course Walk Distance: 1 mile Our goal is to double last year's participation from 500 walkers and runners to 1000 :) You can help! Bring a friend or family member with you. Or even two. There will be all kinds of Father's Day race categories including "Father-Son" winners. As well as awards for the top three 5K finishers in 5 year age increments beginning with 14 and under right thru 80 and older. Bring your dad and run with him. Or your grandfather! We are hoping to double everything from last year: attendance, funds raised, public awareness. Last year we raised $180,000 for ALS Research thanks to: 1) supporters of our Boston Marathon runner, Sue Zolner 2) the Father-Son Team of Larry and Zach Davis who biked over 200 miles from Rochester to Old Forge, NY 3) the 2 day marathon run of McQuaid Jesuit High School's Cross Country Team 4) supporters of Medved's 5K Run/Walk to CURE ALS As you are aware, we have decided to concentrate our efforts here in Rochester, given Dave's increasingly limited mobility and therefore we did not enlist your support at the Boston Marathon 2001. http://www.geocities.com/teamals/ Team ALS Website Our Ever-growing Sponsor List: (confirmed as of April 27, 2001) Al Caprino Lawn and Landscaping Service Blue Chip Computer Borg Imaging/Radiology Group Dr. Steven Kazley,Orthodontist Medved's Sporting Apparel Messner Carpeting Montana Mills Rochester Opthalmological Group Rochester Red Wings We will continue to update our list. Our magic number is 100. Hope, after all, is that thing with feathers ... We anticipate participation from some of Rochester's finest runners. Several already signed up to run are Team Brownstone's: Sue Zoltner and Nate Huckle. We anticipate that our Brighton School District's Twelve Corners Middle School Bands will perform along with the TCMS 6th grade chorus. We are hoping that race time weather is 60 something, sunny, and breezy. We are hoping. You may download race forms on the Genesee Valley Harriers' web site at: http://www.gvh.net Race forms may also be obtained at: Medved's Sporting Apparel (on Monroe Ave directly across from Chase Pitkin) Pre-registration: $14 which includes an official race t-shirt. Race day registration: $20. Walkers and runners will start together and proceed along divergent courses. Fees above are for the walk or the race. All proceeds raised (except for the cost of the police :) will go to: ALS Therapy Development Foundation in Boston, Mass. (web site address is: www.als-tdf.org and forwarded to: The Harvard Institutes of Medicine. Any family donating $250 or more will have their name printed on our race t-shirts along with all of our sponsors. If you decide to donate $250 or more, you can make the checks directly out to ALS-TDF. But send it to us at: 371 Antlers Drive Rochester, NY 14618 So that we can make sure that your family name is printed on our race t-shirts. We will then send your contribution on to the ALS--TDF in Boston. Contributions are fully tax dedictible. ALS-TDF is a 501 c (3) charity. Pledge forms should be submitted the day of the race if at all possible. Prizes for top fundraisers are rapidly growing: including a Junior Membership to Webster Golf Club good for the entire season ages 18 and under. For you out-of-towners able to join us on race day here in Rochester, we can help with hotel arrangements. E-Mail us at our TEAM ALS address: TEAMALS2001@aol.com If you cannot make it, you can consider pledging some financial support to anyone who will be running or walking that day. We will begin updating lists of confirmed walkers or runners beginning in May. Where possible, the list will include runners'/walkers' their e-mail addresses so that you can contact them with your support should you choose to help in this way. It's not as if someone has decreed that victims of ALS will have about as much hope as victims of some disease curable only by antibiotics - before the development of antibiotics. There simply are at present no "antibiotics" to cure ALS. Because PALS are miniscule in numbers. Because no costly experimental treatments exist to tax the insurance companies. Because ALS is not contagious. Because cycles can be -- as we all know - vicious. Cycles can also -- as we all know -- be broken. . . Sincerely, The Green Family/TEAM ALS (www.geocities.com/teamals) (3) ===== An ALS Progression To Glory: Poem ========== Date : Sat, 28 Apr 2001 >From : Mary Dunlap Subject: An ALS Progression To Glory: Poem An ALS Progression To Glory A thousand times, the questions come, Shall not the Judge of all the earth do right? Shall not the Lord judge rightly? Shall a man receive only good and not affliction from the Lord? My friend's gone down. Healthy, handsome, heady, husky. My friend, Servant to his Lord and his fellow man. Loyal, Yet his body betrays him. This disease robs him. My anger rages. I cry out "why?" This isn't the way this man should die! And then the peal rings back to me, Of God's great power and sovereignty. He tells us always to keep in sight, Shall not the Judge of all the earth do right? The long progression downward Brings jabbing changes. Despair. A man completely faithful to his Lord and others, Finds legs and knees and feet not faithful, And hands and fingers undependable. An unwelcome chair becomes his companion, With switches, And gears, And whirling noises. And one knows this manacle will not be tossed aside this side of Jordan. O, dear God, why? Why this man? Why his wife? Why die this way? Why these indignities? Why does this rising star fall in this way? Extinguished. At this time. At his age. And what of wife, daughter, son, brothers, sisters, parents, grandchildren? And then the peal rings back to me. Of God's great power and sovereignty. He tells us always to keep in sight, Shall not the Judge of all the earth do right? The neck, And speaking muscles, Now gone. His voice, Beyond any capability to be reclaimed. No longer in service to this man, his music, or his King. Skillful hands now gone. Stolen by the disease. Fingers too. Only able to slightly twitch small levers. Arms not functioning. Arms not able to caress a life long darling, A son, daughters. A mother, father. Or clutch a "Rusty" or "Paint," Or grandchildren, dear and small, Who wonder, "why is pops this way?" And then the peal rings back to me, Of God's great power and sovereignty. He tells us always to keep in sight, Shall not the Judge of all the earth do right? The iron chair has become more the morbid manacle, It's cushions not staving off pain. Anger. Doubts. Fear. This is not right! It's so unfair! Medical procedures. Pain. Choking. Medications. Limbs out of control. Slowly slipping. Withering. Waiting. The time so long as we reconcile time. While in the room, Glory to God sitting ever present over there, along side, And theology standing by, As we slowly wait for death to finally come to the door and say "we're ready." But my friend, There, Thinking alone to himself, inside himself, Sitting in silence: Me, here, locked inside this body. Anticipation of missing loved ones. Then remembering blessings and things of great fondness, Then frustrations. Trapped. Straining to continue with courage. Straining to accept grace for today. To my friend, then, the peal rings, even to he, Of God's great power and sovereignty. It tells him always to keep in sight, Shall not the Judge of all the earth do right? Even through this refiners fire, Even through this pain. There is assured: Overflowing Promises from a Loving Judge. Ultimately this will be a small thing. Death ending a life, but not relationships. So, reconciled, he says I enter, Lord. Yes, now I enter. I see ahead already those from many tribes and tongues. I see familiar faces, the victorious crowds, His face. I hear the echoes of the first strains of rejoicing wafting toward me. And the peal rings to me, Of God's great power and sovereignty. I see Him now in my own sight. Shall not the Judge of Heaven do right? (c) Philip R. Farthing 2001 prfarthing@aol.com (4) ===== re: Intrathecal Gamma Globulin treatment ========== >From : Mary Buchner Subject: Date : Fri, 27 Apr 2001 I am looking for a doctor who will do the Intrathecal Gamma Globulin treatment for ALS patients. I live in the Midwest (Wisconsin). If anyone has had the treatment, could you please e-mail me and tell me how you are doing and approximate cost. Thank you. My e-mail is marybdavec@yahoo.com or buchner.mary@co.la-crosse.wi.us (5) ===== ALS questions from Italy ========== Date : Thu, 26 Apr 2001 Subject: ALS >From : alessandra zavatta My name is Alessandra Zavatta, I'm Italian. My father is afflicted with ALS since 1994 and now he is not able to use his legs (he is 58 years old). I'd like to speak with some researcher; are there some research institutes of ALS in Europe, or only in America? How can an Italian citizen (like me) be inclused in some list to test new medicine to cure ALS? Are there other medicine, except Riluzolo, for treatment of ALS? Is it possible to recover from ALS? Have you recovered from ALS? Thank you, I'm waiting for your answer, bye. Alessandra Zavatta Rimini (Italy) E-mail: alessandra.zavatta@libero.it === end of alsd 844 ===