Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Sorry forgot to include her REAL NAME It is Gillian Andersen There is a site on her if you go to your search program and type in neurofibromatosis Marnie At 12:06 AM 10/11/00 -0400, you wrote: >Its Jillian ? from that Sci Fi show and her brother doesn't have NF2, he has >NF1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Sorry forgot to include her REAL NAME It is Gillian Andersen There is a site on her if you go to your search program and type in neurofibromatosis Marnie At 12:06 AM 10/11/00 -0400, you wrote: >Its Jillian ? from that Sci Fi show and her brother doesn't have NF2, he has >NF1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Gillian ;her brother has NF1 and she is connected to NF Inc. She does a lot, but again, her brother has NF1. Marie Clinical trials >> >> >> >> >> >>> Dear Marie, >> >>> >> >>> >> >>> There is also a lot of trials associated with various institutions that >> are >> >>> not listed here. Europe as well. I find it illuminating as to what they >> are >> >>> still trying to establish....or beginning to consider. That's why I >> thought >> >>> we should have a database and pass on a lot of this info......and >> perhaps >> >>> save some time. >> >>> After Barbara's post of those drugs, I started to look at the big drug >> >>> companies and their research and where they are heading..... >> >>> I found Myriad Genetics an interesting company and was a little alarmed >> to >> >>> see they hold patents on genes. They have explained to me that you can >> only >> >>> hold a patent on a small identified function(or dysfunction) of a gene. >> >>> (They have the patent to BRCA1). I suppose that Celera has the Nf2 gene, >> >> I'm >> >>> guessing.Perhaps this just means that anybody who finds a pathway of >> drug >> >> or >> >>> gene therapy has to pay out a lot of money to whoever holds the >> >>> patent.....Still so much to learn.. >> >>> Can't find any company so far focusing on a specific therapy for us >> >>> though..... However am getting responses from them and always believe in >> >>> lobbying people. >> >>> I would think that if we could get a drug company to undertake >> specific >> >>> research into a therapy, we would see a result sooner (durr)... >> >>> >> >>> I'm still not understanding something fundamental here.....going through >> >> all >> >>> the gene therapy trials(see Medscape gene therapy trials) that have been >> >>> undertaken with various disorders (with mixed results!), I wonder why >> >> these >> >>> disorders have reached this point and NF has not.........where are we >> in >> >>> the " pipeline'? Are we in any pipeline? I understand that the disorders >> >> that >> >>> involve more than one chromosome are much more complicated, but this >> isn't >> >>> our problem.. >> >>> Whilst some of these drugs that are mentioned may be relevant to NF2, >> it >> >>> would be better if they had been developed with Nf2 in mind... >> >>> >> >>> Any more clues, I look forward to reading your posts and how they >> >> illuminate >> >>> me. >> >>> Rosemary. >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >> >> >> >> >> >> >Marie, I'm so pleased you said that....after being initially surprised and >> >heartened by the amount of research dollars going into NF1 and 2 research, >> >I became increasingly frustrated with the lack of development of >> therapies. >> >Who do we lobby?What can we do? Rosemary. >> > >> > >> > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Gillian ;her brother has NF1 and she is connected to NF Inc. She does a lot, but again, her brother has NF1. Marie Clinical trials >> >> >> >> >> >>> Dear Marie, >> >>> >> >>> >> >>> There is also a lot of trials associated with various institutions that >> are >> >>> not listed here. Europe as well. I find it illuminating as to what they >> are >> >>> still trying to establish....or beginning to consider. That's why I >> thought >> >>> we should have a database and pass on a lot of this info......and >> perhaps >> >>> save some time. >> >>> After Barbara's post of those drugs, I started to look at the big drug >> >>> companies and their research and where they are heading..... >> >>> I found Myriad Genetics an interesting company and was a little alarmed >> to >> >>> see they hold patents on genes. They have explained to me that you can >> only >> >>> hold a patent on a small identified function(or dysfunction) of a gene. >> >>> (They have the patent to BRCA1). I suppose that Celera has the Nf2 gene, >> >> I'm >> >>> guessing.Perhaps this just means that anybody who finds a pathway of >> drug >> >> or >> >>> gene therapy has to pay out a lot of money to whoever holds the >> >>> patent.....Still so much to learn.. >> >>> Can't find any company so far focusing on a specific therapy for us >> >>> though..... However am getting responses from them and always believe in >> >>> lobbying people. >> >>> I would think that if we could get a drug company to undertake >> specific >> >>> research into a therapy, we would see a result sooner (durr)... >> >>> >> >>> I'm still not understanding something fundamental here.....going through >> >> all >> >>> the gene therapy trials(see Medscape gene therapy trials) that have been >> >>> undertaken with various disorders (with mixed results!), I wonder why >> >> these >> >>> disorders have reached this point and NF has not.........where are we >> in >> >>> the " pipeline'? Are we in any pipeline? I understand that the disorders >> >> that >> >>> involve more than one chromosome are much more complicated, but this >> isn't >> >>> our problem.. >> >>> Whilst some of these drugs that are mentioned may be relevant to NF2, >> it >> >>> would be better if they had been developed with Nf2 in mind... >> >>> >> >>> Any more clues, I look forward to reading your posts and how they >> >> illuminate >> >>> me. >> >>> Rosemary. >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >> >> >> >> >> >> >Marie, I'm so pleased you said that....after being initially surprised and >> >heartened by the amount of research dollars going into NF1 and 2 research, >> >I became increasingly frustrated with the lack of development of >> therapies. >> >Who do we lobby?What can we do? Rosemary. >> > >> > >> > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Gillian ;her brother has NF1 and she is connected to NF Inc. She does a lot, but again, her brother has NF1. Marie Clinical trials >> >> >> >> >> >>> Dear Marie, >> >>> >> >>> >> >>> There is also a lot of trials associated with various institutions that >> are >> >>> not listed here. Europe as well. I find it illuminating as to what they >> are >> >>> still trying to establish....or beginning to consider. That's why I >> thought >> >>> we should have a database and pass on a lot of this info......and >> perhaps >> >>> save some time. >> >>> After Barbara's post of those drugs, I started to look at the big drug >> >>> companies and their research and where they are heading..... >> >>> I found Myriad Genetics an interesting company and was a little alarmed >> to >> >>> see they hold patents on genes. They have explained to me that you can >> only >> >>> hold a patent on a small identified function(or dysfunction) of a gene. >> >>> (They have the patent to BRCA1). I suppose that Celera has the Nf2 gene, >> >> I'm >> >>> guessing.Perhaps this just means that anybody who finds a pathway of >> drug >> >> or >> >>> gene therapy has to pay out a lot of money to whoever holds the >> >>> patent.....Still so much to learn.. >> >>> Can't find any company so far focusing on a specific therapy for us >> >>> though..... However am getting responses from them and always believe in >> >>> lobbying people. >> >>> I would think that if we could get a drug company to undertake >> specific >> >>> research into a therapy, we would see a result sooner (durr)... >> >>> >> >>> I'm still not understanding something fundamental here.....going through >> >> all >> >>> the gene therapy trials(see Medscape gene therapy trials) that have been >> >>> undertaken with various disorders (with mixed results!), I wonder why >> >> these >> >>> disorders have reached this point and NF has not.........where are we >> in >> >>> the " pipeline'? Are we in any pipeline? I understand that the disorders >> >> that >> >>> involve more than one chromosome are much more complicated, but this >> isn't >> >>> our problem.. >> >>> Whilst some of these drugs that are mentioned may be relevant to NF2, >> it >> >>> would be better if they had been developed with Nf2 in mind... >> >>> >> >>> Any more clues, I look forward to reading your posts and how they >> >> illuminate >> >>> me. >> >>> Rosemary. >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >> >> >> >> >> >> >Marie, I'm so pleased you said that....after being initially surprised and >> >heartened by the amount of research dollars going into NF1 and 2 research, >> >I became increasingly frustrated with the lack of development of >> therapies. >> >Who do we lobby?What can we do? Rosemary. >> > >> > >> > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 You mention Myriad Genetics. One of the people closely involved with Myriad is Mark Skolnick and it is he who identified Chromosome 17 as the one on which the gene for Nf1 is found. He attended a conference in England that was organised by the Nf Association to which one of the other delegates had brought his computer with a 'chromosome deletion map'. One evening, after a good meal, all the delegates pooled their knowledge based on research each one was carrying out to find the right chromosome and slowly the chromosomes were filled up. Mark was particularly happy that night because it filled in some of the data he was missing and it was only six weeks later that he made the announcement. He is now involved with Myriad and the patenting of human genes. It is true, they have a patent on BRCA1 in the US. Three years ago I was involved in trying to stop the patenting of genes being allowed in Europe but unfortunately the Bill went through and it looks like they are going to be able to patent them over here. This probably means that only a few laboratories in Europe are going to be able to test for BRCA1 - under licence to Myriad and Myriad taking royalties for each test - but the majority will have to be done in the States. The figure for England that I have heard quoted is about $2,400 per test. At the moment, with the gene not patented, the test costs about $800. And this is just the beginning. As far as drugs for Nf2 are concerned, there are certainly two drugs which are nearing trial stage which may be useful but until the trials are started it is impossible to say whether they will live up to expectations. We in the UK are probably going to be involved in the trials and we have meetings planned for next month with one of the companies who produce one of the drugs. But the main thing is not to build up too many hopes at the moment. As soon as anything positive comes along, you will all be the first to know. Hope this helps. a Dear Marie, There is also a lot of trials associated with various institutions that are not listed here. Europe as well. I find it illuminating as to what they are still trying to establish....or beginning to consider. That's why I thought we should have a database and pass on a lot of this info......and perhaps save some time. After Barbara's post of those drugs, I started to look at the big drug companies and their research and where they are heading..... I found Myriad Genetics an interesting company and was a little alarmed to see they hold patents on genes. They have explained to me that you can only hold a patent on a small identified function(or dysfunction) of a gene. (They have the patent to BRCA1). I suppose that Celera has the Nf2 gene, I'm guessing.Perhaps this just means that anybody who finds a pathway of drug or gene therapy has to pay out a lot of money to whoever holds the patent.....Still so much to learn.. Can't find any company so far focusing on a specific therapy for us though..... However am getting responses from them and always believe in lobbying people. I would think that if we could get a drug company to undertake specific research into a therapy, we would see a result sooner (durr)... I'm still not understanding something fundamental here.....going through all the gene therapy trials(see Medscape gene therapy trials) that have been undertaken with various disorders (with mixed results!), I wonder why these disorders have reached this point and NF has not.........where are we in the " pipeline'? Are we in any pipeline? I understand that the disorders that involve more than one chromosome are much more complicated, but this isn't our problem.. Whilst some of these drugs that are mentioned may be relevant to NF2, it would be better if they had been developed with Nf2 in mind... Any more clues, I look forward to reading your posts and how they illuminate me. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 You mention Myriad Genetics. One of the people closely involved with Myriad is Mark Skolnick and it is he who identified Chromosome 17 as the one on which the gene for Nf1 is found. He attended a conference in England that was organised by the Nf Association to which one of the other delegates had brought his computer with a 'chromosome deletion map'. One evening, after a good meal, all the delegates pooled their knowledge based on research each one was carrying out to find the right chromosome and slowly the chromosomes were filled up. Mark was particularly happy that night because it filled in some of the data he was missing and it was only six weeks later that he made the announcement. He is now involved with Myriad and the patenting of human genes. It is true, they have a patent on BRCA1 in the US. Three years ago I was involved in trying to stop the patenting of genes being allowed in Europe but unfortunately the Bill went through and it looks like they are going to be able to patent them over here. This probably means that only a few laboratories in Europe are going to be able to test for BRCA1 - under licence to Myriad and Myriad taking royalties for each test - but the majority will have to be done in the States. The figure for England that I have heard quoted is about $2,400 per test. At the moment, with the gene not patented, the test costs about $800. And this is just the beginning. As far as drugs for Nf2 are concerned, there are certainly two drugs which are nearing trial stage which may be useful but until the trials are started it is impossible to say whether they will live up to expectations. We in the UK are probably going to be involved in the trials and we have meetings planned for next month with one of the companies who produce one of the drugs. But the main thing is not to build up too many hopes at the moment. As soon as anything positive comes along, you will all be the first to know. Hope this helps. a Dear Marie, There is also a lot of trials associated with various institutions that are not listed here. Europe as well. I find it illuminating as to what they are still trying to establish....or beginning to consider. That's why I thought we should have a database and pass on a lot of this info......and perhaps save some time. After Barbara's post of those drugs, I started to look at the big drug companies and their research and where they are heading..... I found Myriad Genetics an interesting company and was a little alarmed to see they hold patents on genes. They have explained to me that you can only hold a patent on a small identified function(or dysfunction) of a gene. (They have the patent to BRCA1). I suppose that Celera has the Nf2 gene, I'm guessing.Perhaps this just means that anybody who finds a pathway of drug or gene therapy has to pay out a lot of money to whoever holds the patent.....Still so much to learn.. Can't find any company so far focusing on a specific therapy for us though..... However am getting responses from them and always believe in lobbying people. I would think that if we could get a drug company to undertake specific research into a therapy, we would see a result sooner (durr)... I'm still not understanding something fundamental here.....going through all the gene therapy trials(see Medscape gene therapy trials) that have been undertaken with various disorders (with mixed results!), I wonder why these disorders have reached this point and NF has not.........where are we in the " pipeline'? Are we in any pipeline? I understand that the disorders that involve more than one chromosome are much more complicated, but this isn't our problem.. Whilst some of these drugs that are mentioned may be relevant to NF2, it would be better if they had been developed with Nf2 in mind... Any more clues, I look forward to reading your posts and how they illuminate me. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 You mention Myriad Genetics. One of the people closely involved with Myriad is Mark Skolnick and it is he who identified Chromosome 17 as the one on which the gene for Nf1 is found. He attended a conference in England that was organised by the Nf Association to which one of the other delegates had brought his computer with a 'chromosome deletion map'. One evening, after a good meal, all the delegates pooled their knowledge based on research each one was carrying out to find the right chromosome and slowly the chromosomes were filled up. Mark was particularly happy that night because it filled in some of the data he was missing and it was only six weeks later that he made the announcement. He is now involved with Myriad and the patenting of human genes. It is true, they have a patent on BRCA1 in the US. Three years ago I was involved in trying to stop the patenting of genes being allowed in Europe but unfortunately the Bill went through and it looks like they are going to be able to patent them over here. This probably means that only a few laboratories in Europe are going to be able to test for BRCA1 - under licence to Myriad and Myriad taking royalties for each test - but the majority will have to be done in the States. The figure for England that I have heard quoted is about $2,400 per test. At the moment, with the gene not patented, the test costs about $800. And this is just the beginning. As far as drugs for Nf2 are concerned, there are certainly two drugs which are nearing trial stage which may be useful but until the trials are started it is impossible to say whether they will live up to expectations. We in the UK are probably going to be involved in the trials and we have meetings planned for next month with one of the companies who produce one of the drugs. But the main thing is not to build up too many hopes at the moment. As soon as anything positive comes along, you will all be the first to know. Hope this helps. a Dear Marie, There is also a lot of trials associated with various institutions that are not listed here. Europe as well. I find it illuminating as to what they are still trying to establish....or beginning to consider. That's why I thought we should have a database and pass on a lot of this info......and perhaps save some time. After Barbara's post of those drugs, I started to look at the big drug companies and their research and where they are heading..... I found Myriad Genetics an interesting company and was a little alarmed to see they hold patents on genes. They have explained to me that you can only hold a patent on a small identified function(or dysfunction) of a gene. (They have the patent to BRCA1). I suppose that Celera has the Nf2 gene, I'm guessing.Perhaps this just means that anybody who finds a pathway of drug or gene therapy has to pay out a lot of money to whoever holds the patent.....Still so much to learn.. Can't find any company so far focusing on a specific therapy for us though..... However am getting responses from them and always believe in lobbying people. I would think that if we could get a drug company to undertake specific research into a therapy, we would see a result sooner (durr)... I'm still not understanding something fundamental here.....going through all the gene therapy trials(see Medscape gene therapy trials) that have been undertaken with various disorders (with mixed results!), I wonder why these disorders have reached this point and NF has not.........where are we in the " pipeline'? Are we in any pipeline? I understand that the disorders that involve more than one chromosome are much more complicated, but this isn't our problem.. Whilst some of these drugs that are mentioned may be relevant to NF2, it would be better if they had been developed with Nf2 in mind... Any more clues, I look forward to reading your posts and how they illuminate me. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Jimmy, we're looking for someone famous, not infamous! >>It has been said that >if we had a " name " -be it an athlete, actor, politician--who had NF2, then >you would have people asking--what is Nf2, etc. far aAs s who to ......................................................................... ummm,cough,cough,uhuhuh umm.Need I remind you,you got ME........JIMMY!!!<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Jimmy, we're looking for someone famous, not infamous! >>It has been said that >if we had a " name " -be it an athlete, actor, politician--who had NF2, then >you would have people asking--what is Nf2, etc. far aAs s who to ......................................................................... ummm,cough,cough,uhuhuh umm.Need I remind you,you got ME........JIMMY!!!<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Jimmy, we're looking for someone famous, not infamous! >>It has been said that >if we had a " name " -be it an athlete, actor, politician--who had NF2, then >you would have people asking--what is Nf2, etc. far aAs s who to ......................................................................... ummm,cough,cough,uhuhuh umm.Need I remind you,you got ME........JIMMY!!!<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 I know you didn't really mean " too bad MJF has parkinsons " , but it sure sounded weird!. .Both diseases are quite a burden to bear. . and I don't think any of us would wish either of them on anyone! ! In a message dated 10/10/2000 9:48:28 PM Eastern Daylight Time, mcdrew@... writes: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 I know you didn't really mean " too bad MJF has parkinsons " , but it sure sounded weird!. .Both diseases are quite a burden to bear. . and I don't think any of us would wish either of them on anyone! ! In a message dated 10/10/2000 9:48:28 PM Eastern Daylight Time, mcdrew@... writes: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 I know you didn't really mean " too bad MJF has parkinsons " , but it sure sounded weird!. .Both diseases are quite a burden to bear. . and I don't think any of us would wish either of them on anyone! ! In a message dated 10/10/2000 9:48:28 PM Eastern Daylight Time, mcdrew@... writes: Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.