Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Your wish is my command, Rhoda: http://www.pharmacology.about.com/health/pharmacology/cs/drugcompanies/ ----- Original Message ----- From: " rhoda kendry " <plantjunkie@...> <egroups> Sent: Thursday, January 18, 2001 9:08 AM Subject: [ ] research > hi again > while talking to my doc yesterday i mentioned that we > of this group would love to do surveys or answer > questions for research for our diseases. > he told me that the drug companies supply the money > for the research scientist's. the scientists have no > controll . so ladies and gents he suggested we > bombard the drug companies with emails and letters > asking for just such a study to be done for us. > > anyone have any email addys for the big guys?? > i feel like kicking some deskjockies butt... lol > > rhoda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 my angel to the rescue again rhoda --- Matsumura <Matsumura_Clan@...> wrote: > Your wish is my command, Rhoda: > > http://www.pharmacology.about.com/health/pharmacology/cs/drugcompanies/ > > > > > ----- Original Message ----- > From: " rhoda kendry " <plantjunkie@...> > <egroups> > Sent: Thursday, January 18, 2001 9:08 AM > Subject: [ ] research > > > > hi again > > while talking to my doc yesterday i mentioned that > we > > of this group would love to do surveys or answer > > questions for research for our diseases. > > he told me that the drug companies supply the > money > > for the research scientist's. the scientists have > no > > controll . so ladies and gents he suggested we > > bombard the drug companies with emails and letters > > asking for just such a study to be done for us. > > > > anyone have any email addys for the big guys?? > > i feel like kicking some deskjockies butt... lol > > > > rhoda > > > > > > > > Chat room: chat/ > Web pages for our group: > http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Change subscription options: > > _______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Thanks so much for the info. I briefly went over Dr. Zagon's work and will examine it in more detail later. There must be someone else either at the NIH or elsewhere who is looking at the immunomodulatory effects of the opiate class. I've heard that opioid receptors have been found on lymphokines but this is old knowledge I think. I just haven't heard of anything new that can accounts for the possible immunomodulatory effects seen with LDN from a basic research point of view. I'd love to work on this research problem with someone. If only there was a lab. I feel for you guys because much work needs to be done in this area. I'm sure there are other agents, not just LDN, that have similar effects. I will keep looking around. Can some folks volunteer some info if comfortable? Perhaps age, diagnosis, years with illness before LDN, Symptoms before LDN, how long on LDN, and clinical benefits you've noticed? Thanks. - Christian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2004 Report Share Posted April 11, 2004 Collège de France Hopital de la Salpêtrière Institute Pasteur, Paris Istituto Superiore della Sanità, Rome Mayo Clinic Max Planck Institute, Germany Medical University of South Carolina Mount Sinai Medical Center, New York Queen's University, Kingston, Ontario University of Cambridge, UK University of North Dakota University of Wisconsin, Madison Yale University Barrow Neurological Institute in Phoenix, Arizona Project resources target clinically oriented experiments on the cutting-edge of remyelination research.Thus far, the Myelin Project has financed 42 experiments for a total in excess of $4.7Million(US). The Myelin Project stands alone in funding the cost of our first human trials, this has proved to be more expensive than first envisaged.Many other researchers are submitting additional experiment proposals for this year. In order to finance the experiments, the Project needs additional funding. Work Group meetings Following the 14th Annual Meeting of The Myelin Project Work Group, held September 14-16 in Acqui Terme, Italy, The Myelin Project Headquarters and Le Projet Myéline decided to provide $300,000 toward this first phase of the trial, with additional funding to come from other sources.Our distinguished international Task Force convenes at regular intervals to share and critique research results, long before publication in medical journals. This assures a cooperative rather than a competitive approach and a common course toward the myelin solution. Today, neurological science is on the brink of a great leap forward. Dramatic new cell-transplant therapies are being tested that may induce the central nervous system to regenerate its missing myelin, repair damaged nerves and restore motion, sensation and vision. Research - how fast are things moving? Great strides are being made. Our research results have now allowed us to conduct our first human trial. Myelin forming cells were transplanted into the Central Nervous System of a woman suffering from the progressive form of multiple sclerosis. The transplant was a Phase-1 study designed to prove the safety of the procedure. The team from Yale University Medical Center that performed the operation included among others: Dr Vollmer, principal investigator; Dr Kocsis, in charge of cell preparation; Dr Dennis Spencer, who performed the surgery. ------------------------------------------------------------------------ Schwann Cell transplantation update In an update of the Schwann cell transplantation trial at Yale, Dr. Vollmer reported that his team is still reviewing the results of the biopsies taken from the second and third transplanted MS patients. Dr. Vollmer said that he has not seen evidence of either cell survival or new myelin formation so far, but cautioned that no final assessment could be made before the ongoing review is completed. Assuming that no positive result emerges from this review, the question then arises as to whether we should go ahead with transplanting the remaining two patients according to the current protocol or whether we should modify thetrial design, for instance by planning to use other cell types. We agreed with Dr. Vollmer that we would cross that bridge when we have the final biopsy results. Dr. Vollmer also reported that none of the three patients transplanted so far suffered complications from the operation, confirming the safety of the procedure, an important achievement in itself. Although Dr. Vollmer has recently moved to the Barrow Neurological Institute in Phoenix, Arizona, he continues to oversee the Yale trial. ------------------------------------------------------------------------ Transplantation of neural stem cells Dr. Gianvito o and his collaborator Dr. Fulvio Mavilio, both of the San Raffaele Scientific Institute in Milan, presented their progress report after the first year of a three-year experiment sponsored by The Italian Branch of the Myelin Project. The researchers are employing a two-pronged approach in MS: transplantation (via injection) of neural stem cells; and gene therapy using a viral vector, to deliver anti-inflammatory and neural growth factors into the brain. These approaches do not involve neurosurgery, as the cells are injected by either intravenous or intrathecal (i.e., into the cerebrospinal fluid) routes. Dr. o has been working so far with adult neural stem cells in the mouse model of experimental allergic encephalomyelitis (EAE), a condition similar to MS. In the course of their work, the researchers found that the injected cells were able to enter the brain, home in on demyelinated areas, appear to differentiate into oligodendrocytes (the myelin-producing cells in the brain), and remyelinate axons. The injected cells were also shown to rescue native oligodendrocyte progenitors through a "bystander" effect that restrains the production of two growth factors that normally appear following injury, and which prevent oligodendrocyte progenitors from repairing damaged myelin. The transplanted cells' neuroprotective effects were sustained, lasting up to 100 days. Dr. o also reported that the treated mice showed significant remission of EAE neurological deficits as compared to untreated control animals. For his part, Dr. Mavilio has been working on developing an enhanced vector, in which researchers remove the pathogenic "guts" of a virus but leave the shell, and use it to carry beneficial genes into cells in the body. In particular he succeeded in engineering a vector capable of carrying genes that code for growth and anti-inflammatory factors. In 2003, the San Raffaele team will begin experimenting in monkeys. If those studies are successful, they intend to move to human trials. ------------------------------------------------------------------------ Schwann Cell research proposal Dr. Anne Baron-Van Evercooren has submitted a proposal for a new experiment with monkeys. Working with clinicians at the Salpêtrière Hospital in Paris, she plans to transplant Schwann cells into monkeys with EAE, which closely mimics the inflammatory demyelinating environment of MS in humans. In particular, the researchers intend to implant the cells into focal lesions in the cerebellar peduncle, a site at the rear of the brain. Demyelination in this site often results in impaired movements and tremor in MS. In contrast to the Yale trial, which uses cells extracted from the patients one day prior to the operation, Dr. Baron-Van Evercooren will implant cells that have been expanded with a mix of growth factors in the lab over a period of several weeks. Working first in rats, the researchers will try several techniques with regard to: labeling the cells; the route of delivery (surgical implantation or injection); and MRI imaging. The optimal methods will be selected for the subsequent monkey experiments, at the end of which the researchers will verify the MRI images with extensive laboratory analyses of the monkey tissue. This last step will allow in-depth examination of Schwann cell survival and remyelination potential. The two-year study is designed as a prelude to a clinical trial. We are circulating Dr. Baron-Van Evercooren's proposal to the Myelin Project Work Group for review; if the response is positive, we intend to finance the study. In yet another international collaboration promoted by The Myelin Project, Dr. Baron-Van Evercooren is considering joining forces with Dr. o and his colleagues; both groups' monkey experiments have aspects in common and have recently received European Union approval. ------------------------------------------------------------------------ Progestin study proposal In the past we have sponsored studies by Drs. Etienne-Emile Baulieu and Schumacher on the remyelinating abilities of steroidal hormones in MS. At the annual meeting, Dr. Baulieu and colleagues elaborated on a proposal for a clinical trial to examine the use of progestin (a synthetic form of progesterone), in 200 post-partum women with MS. Pregnant women with MS generally experience a decline in relapses during the third trimester of pregnancy, followed by a sharp increase in the three months post-partum. The trial, which aims to prevent relapses, will be randomized, double-blind, and placebo-controlled. For three months after giving birth, women will be administered progestin and estradiol, a form of estrogen. Trial participants will be evaluated at several points during pregnancy, and at one, three, and six months post-partum. Drs. Baulieu, Schumacher, and trial coordinator Dr. e El-Etr are from the Bicêtre Hospital in Paris; they will be collaborating with neurologist Dr. Christian Confavreux of the Hôpital Neurologique in Lyon. The only problem with this study is its cost-approximately $1 million. Whether we might finance part of this cost depends on the volume of donations we receive in the coming months. CLICK HERE TO RETURN TO TOP OF PAGE ------------------------------------------------------------------------ Simvastatin trial update Two of our Work Group members, Dr. Inderjit Singh (who could not come to the meeting) and Dr. Vollmer, have conducted a multicenter trial of the cholesterol drug simvastatin in MS patients, funded by Merck & Co. Dr. Vollmer will report results of the trial when analysis of the data is completed. Simvastatin's potential as a therapy for MS was highlighted in a study published last month in the journal Nature and echoed in the New York Times. The authors included some renowned MS researchers on the West Coast of the U.S. ------------------------------------------------------------------------ Spinal chord lesions study update Earlier this year we had given Dr. Ian Duncan and neuroradiologist Dr. Field, both of the University of Wisconsin-Madison, a grant to study the feasibility of repairing spinal cord lesions in MS via cell transplantation. A significant subset of MS patients have lesions in their spinal cord that account for most or all of their symptoms. Part of the grant was for MRI studies aimed at gauging the size of the lesions and at determining whether axons had survived. As a prelude to scanning MS patients, the researchers used advanced MRI techniques to image the brain of the shaking pup, an animal model for Pelizaeus-Merzbacher disease. The data showed low levels of myelin, but bundles of relatively intact axons available for remyelination. In the next few months, they will verify these findings by microscopic examination of the tissue in the lab. The next step will be to use the MRI techniques to characterize spinal cord demyelinating plaques in MS; Dr. Field reported that a group of 10 MS patients has now been selected to undergo MRI scanning. ------------------------------------------------------------------------ Neural cells study update Last year we awarded a grant to Dr. Su-chun Zhang, of the University of Wisconsin-Madison, to develop cells that can repair or replace damaged myelin. One year into the program, Dr. Zhang reports that he has succeeded in guiding undifferentiated embryonic stem cells to become neural cells. He also has figured out a method of inducing a proportion of these cells to differentiate into oligodendrocyte progenitors (OPs). Next year his task will be to refine the process so as to increase the number of OPs produced, and then to see if they produce myelin. To verify this latter point, Dr. Zhang intends to transplant the cells into both congenitally dysmyelinated shiverer mice and chemically demyelinated mice. CLICK HERE TO RETURN TO TOP OF PAGE------------------------------------------------------------------------ Krabbe Disease study update Dr. Evan Snyder of Harvard Medical School talked about his experiment with neural stem cells in twitcher mice, an animal model of Krabbe disease in which the accumulation of psychosine causes cell death. Following transplantation of the cells, he could observe a significant reduction in psychosine levels-a result that indicates that cell replacement therapies with neural stem cells are possible. He mentioned that even better results in demyelinated animals could be obtained by transplanting stem cells engineered to express growth factors-an approach he is currently trying in shiverer mice. Lastly, he reported that, surprisingly, stem cells did not appear to transdifferentiate into native neurons, oligodendrocytes, or astrocytes, but remained undifferentiated. Nevertheless, they promoted remyelination, and produced a host of beneficial neurotrophic factors. ------------------------------------------------------------------------ Leukodystrophies report It is not very often that we can report good news in the leukodystrophies, but this time we are. Dr. Hugo Moser of the Kennedy Krieger Institute in Baltimore presented the results of 10-year international study on the preventive efficacy (or lack thereof) of Lorenzo's Oil in adrenoleukodystrophy (ALD). The study involved 104 presymptomatic ALD boys under six years of age, from both the US and Europe. Two groups emerged in the course of the study: the first included those boys who followed the Lorenzo's Oil regime scrupulously, and normalized their very long chain fatty (VLCFA); in the second were those boys who were less strict with the regime and whose VLCFA remained at abnormally high levels. A comparison of the two groups showed that the odds of developing the childhood form of the disease for the boys who adhered strictly to the regime were significantly lower than those of noncompliant boys. The oil's preventive effect was not complete, however: some boys who lowered their VLCFA levels still developed the childhood form of ALD. In addition, boys who escape childhood ALD (onset is generally between 6 to 10 years of age) are still at risk of developing the adult form, adrenomyeloneuropathy (AMN), which usually manifests itself in the late 20s or early 30s. Along with the main finding, another merit of the study was to demonstrate for the first time that the VLCFA indeed have a role in the pathogenesis of ALD. We have committed to award a $50,000 grant to Dr. Moser for a staff person to: follow up the boys who did not come down with symptoms within the time frame of the study; reinforce historical statistics on ALD; and prepare all data required by the for FDA approval of Lorenzo's Oil as a therapy for this disease. The funds will originate from donations made to The Myelin Project that are restricted to ALD research. We are also encouraged by word from Germany about the effects of Lorenzo's Oil in AMN. Although it progresses more slowly than the childhood form, AMN is still a serious debilitating disease. Dr. Wolfgang Köhler of Saxonian State Hospital in Hubertusburg has nearly completed a clinical trial of 47 patients, and early observations suggest the oil may help arrest the progress of the disease in this disorder. All patients were subjected to an extensive annual evaluation using clinical, neuropsychological, neurophysiological and MRI techniques over a mean study period of eight years to confirm the oil's clinical efficacy. Dr. Köhler intends to publish the results of his study when it is completed, hopefully before the end of the year. Dr. Paola Leone of the Wood Medical School in New Jersey presented a progress report on a gene therapy trial for Canavan disease. She now has continuous data for one year on three patients who underwent the treatment. Dr. Leone reported that there was no neurological deterioration, no regression in developmental skills, and no significant change in gross motor function. In addition, at three to six months after treatment, she observed MRI improvement as well as a decrease in n-acetyl aspartate, the offending metabolite accumulating in Canavan's. She emphasized the importance of delivering the gene as early as possible, since this treatment yields better results in younger patients. At the end of her presentation, Dr. Leone announced that the trial will continue with a second cohort of six Canavan children. Umbilical cord blood stem cell transplantation can be an effective treatment for several leukodystrophies, including Krabbe disease, metachromatic leukodystrophy, and ALD. Dr. Joanne Kurtzberg of Duke University Medical Center in Durham, North Carolina, presented results on transplantation in 25 Krabbe's patients, three of whom received bone marrow and the rest umbilical cord blood cells. The fatality rate due to transplantation in this group was 10%, of which half was due to graft-versus-host disease. Overall, children do not improve much in the first year, and some continue to deteriorate, Dr. Kurtzberg said. In the second through fifth years after the procedure, the deterioration stops, and some children improve slightly. Dr. Escolar, a collaborator of Dr. Kurtzberg's from University of North Carolina at Chapel Hill, reported that transplantation success depends on disease progression: the earlier, the better. Development in children transplanted under two months of age was in the normal range, while in those transplanted later, it was far below the norm. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Well, I'll certainly do some asking and see if I come up with any ideas on how to go about this. I don't know what will happen or how long it will take, but I will certainly keep you folks posted if I have any luck in getting anyone to talk to me!! Thanks Debbie > Debbie, > Do it. > I don't even have MS, that I know of. > Have my own AI issues, have battled cancer > and now the HepC. But when I read all of your posts > and the posts on my thyroid forum or other boards > and I think of all of us who are suffering NEEDLESSLY... > well, its enough to make me cry. > For anyone who has an auto-immune disease, we deserve > to see credible research that proves there is something > out there that can undo the damage that our polluted world > has done to our immune systems! > Do it! > Lara > ---------------------------------------- > Message: 8 > Hi, folks! I don't know if I can be of any help, but I happen to work for a > group of academics who have extremely close ties to UPMC and CMU in > Pittsburgh. I could do some checking to see if they could put me in touch > and smooth the way to perhaps start the wheels in motion. Let me know if > anyone has any interest and I'll see what I can find out! > > Thanks > > Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 With regard to getting clinical trials started on a " cheap " drug. Recently the M.D. Andersen cancer center in Houston has started a study on the effectiveness of curcumin (active agent in hot peppers) against the blood cancer, multiple myeloma. This has NOTHING to do with LDN, except that curcumin is an unregulated food supplement!! The study is being funded by the Multiple Myeloma Research Foundation which gets money from private donations and big pharma'. So it CAN be done, through private channels. One needs to capture the imagination of ONE recognized medical researcher and find the funding. Best Wishes Blessed be the Lord, who daily loads us with benefits, even the God of our salvation. Selah (pause, consider this) Psalms 68:19 Don Schultz (no medical training, and not terribly bright) Near Joliet IL. Husband and Caregiver to Barb Schultz, born '49 Dx'd June/01; IgA Kappa 5,880, B2M 7.8, Radiation to L3, Aredia now Zometa monthly, 100mg Thal daily & 40mgX4days monthly Dex thru Dec '01; Mar-Jun/02 2 rounds VAD no effect, 2 rounds DTPACE modest effect; autoSCT July/02 full remission in Sep/02. Interferon Aug/02 to Jan 03; Feb 03 HiDose Dex Failed, Velcade Phase3 trial Mar/03 complete response in 2 cycles, Jan 2004 Velcade failed, March 04 Revimid Phase 2 trial 30mg daily, May 04 Mspike 0.8 IgA down to 420. Ongoing PN from Thal, DFCI supplement regimine provides slight relief. http://www.medhelp.org/NIHlib/GF-456.html http://www.healthtalk.com/multiplemyeloma/diseasebasics.cfm http://www.labtestsonline.org/ http://www.myeloma.org/ http://www.multiplemyeloma.org/ Quote Link to comment Share on other sites More sharing options...
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