Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I was under the impression that " supply and demand " played a big part; for example, how big of a demand is there for an NF2 drug, vs. how big a demand is there for a cancer drug? All in the numbers--and drug companies are in business to make money. I understand that the reason $$ have gone in to NF2 tumor research is BECAUSE they think that research might she d light on cancer cures. I don't know if I am explaining this correctly, or if I am completely accurate, but this is just my take on things. 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. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I was under the impression that " supply and demand " played a big part; for example, how big of a demand is there for an NF2 drug, vs. how big a demand is there for a cancer drug? All in the numbers--and drug companies are in business to make money. I understand that the reason $$ have gone in to NF2 tumor research is BECAUSE they think that research might she d light on cancer cures. I don't know if I am explaining this correctly, or if I am completely accurate, but this is just my take on things. 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. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I was under the impression that " supply and demand " played a big part; for example, how big of a demand is there for an NF2 drug, vs. how big a demand is there for a cancer drug? All in the numbers--and drug companies are in business to make money. I understand that the reason $$ have gone in to NF2 tumor research is BECAUSE they think that research might she d light on cancer cures. I don't know if I am explaining this correctly, or if I am completely accurate, but this is just my take on things. 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. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 on 10/10/00 11:08 AM, Marie Drew at mcdrew@... wrote: > I was under the impression that " supply and demand " played a big part; for > example, how big of a demand is there for an NF2 drug, vs. how big a demand > is there for a cancer drug? All in the numbers--and drug companies are in > business to make money. I understand that the reason $$ have gone in to NF2 > tumor research is BECAUSE they think that research might she d light on > cancer cures. I don't know if I am explaining this correctly, or if I am > completely accurate, but this is just my take on things. > 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 10, 2000 Report Share Posted October 10, 2000 on 10/10/00 11:08 AM, Marie Drew at mcdrew@... wrote: > I was under the impression that " supply and demand " played a big part; for > example, how big of a demand is there for an NF2 drug, vs. how big a demand > is there for a cancer drug? All in the numbers--and drug companies are in > business to make money. I understand that the reason $$ have gone in to NF2 > tumor research is BECAUSE they think that research might she d light on > cancer cures. I don't know if I am explaining this correctly, or if I am > completely accurate, but this is just my take on things. > 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 10, 2000 Report Share Posted October 10, 2000 Dear Crew, In response to why not alot of research into NF2 therapies, it is merely a matter of numbers -- there may be less than 10,000 Americans with NF2. However, some points to raise when talking to drug companies and/or doctors: 1. Curing NF2 will cure many if not most other brain tumors -- especially sporadic meningiomas, ependymomas, schwannomas(the most popular types), as well as some brain cancers. 2. Curing NF2 may cure those with mesothelomia(the asbestos cancer) and possibly even lung cancer! 3. NF2 is an ideal model for gene therapy. The gene is relatively small, 595 amino acids and the disease is a single pathway--meaning intervene in the one area and you could cure it versus other diseases that require intervention in multiple areas. There are compelling arguments. Even more frustrating, I've heard it's relatively simple to cure -- and with the proper funding may have been cured by now -- or at least be a heck of alot closer. My recommendation is:\ 1. Contact the NF Foundation and NF Inc and make them aware of you -- to these groups it is a matter of population and pressure 2. Speak to the drug companies with these arguments, you never know who it might hit in a meaningful way -- I'm constantly emailing and speaking to doctors -- and surprisingly, as jaded as some are, they are moved by Adam's story -- a human aspect often hits home even more than statistics. 3. Write your congressmen and thank them for supporting the Army funding or telling them about their constituents witht this disease, so the next time it's reviewed, they know it impacts their state. 4. Try to get friends and your companies to donate money to research -- the NF Foundation, NF Inc, the local hospital, eg Mass General who devotes quite a bit to NF2 research , or family funds--for those of you who don't know, there is the Adam Goodkind NF2 Research Fund at the NF Foundation -- devoted 100% to research grants -- I have told my family that any event, birthday, anniversary, first day of snow, whatever, make a donation to this Fund. 5. Fundraisers--wish I could think of something we could do on a national basis for awareness and money. Open to ideas here. My thoughts for the day Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Dear Crew, In response to why not alot of research into NF2 therapies, it is merely a matter of numbers -- there may be less than 10,000 Americans with NF2. However, some points to raise when talking to drug companies and/or doctors: 1. Curing NF2 will cure many if not most other brain tumors -- especially sporadic meningiomas, ependymomas, schwannomas(the most popular types), as well as some brain cancers. 2. Curing NF2 may cure those with mesothelomia(the asbestos cancer) and possibly even lung cancer! 3. NF2 is an ideal model for gene therapy. The gene is relatively small, 595 amino acids and the disease is a single pathway--meaning intervene in the one area and you could cure it versus other diseases that require intervention in multiple areas. There are compelling arguments. Even more frustrating, I've heard it's relatively simple to cure -- and with the proper funding may have been cured by now -- or at least be a heck of alot closer. My recommendation is:\ 1. Contact the NF Foundation and NF Inc and make them aware of you -- to these groups it is a matter of population and pressure 2. Speak to the drug companies with these arguments, you never know who it might hit in a meaningful way -- I'm constantly emailing and speaking to doctors -- and surprisingly, as jaded as some are, they are moved by Adam's story -- a human aspect often hits home even more than statistics. 3. Write your congressmen and thank them for supporting the Army funding or telling them about their constituents witht this disease, so the next time it's reviewed, they know it impacts their state. 4. Try to get friends and your companies to donate money to research -- the NF Foundation, NF Inc, the local hospital, eg Mass General who devotes quite a bit to NF2 research , or family funds--for those of you who don't know, there is the Adam Goodkind NF2 Research Fund at the NF Foundation -- devoted 100% to research grants -- I have told my family that any event, birthday, anniversary, first day of snow, whatever, make a donation to this Fund. 5. Fundraisers--wish I could think of something we could do on a national basis for awareness and money. Open to ideas here. My thoughts for the day Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Dear Crew, In response to why not alot of research into NF2 therapies, it is merely a matter of numbers -- there may be less than 10,000 Americans with NF2. However, some points to raise when talking to drug companies and/or doctors: 1. Curing NF2 will cure many if not most other brain tumors -- especially sporadic meningiomas, ependymomas, schwannomas(the most popular types), as well as some brain cancers. 2. Curing NF2 may cure those with mesothelomia(the asbestos cancer) and possibly even lung cancer! 3. NF2 is an ideal model for gene therapy. The gene is relatively small, 595 amino acids and the disease is a single pathway--meaning intervene in the one area and you could cure it versus other diseases that require intervention in multiple areas. There are compelling arguments. Even more frustrating, I've heard it's relatively simple to cure -- and with the proper funding may have been cured by now -- or at least be a heck of alot closer. My recommendation is:\ 1. Contact the NF Foundation and NF Inc and make them aware of you -- to these groups it is a matter of population and pressure 2. Speak to the drug companies with these arguments, you never know who it might hit in a meaningful way -- I'm constantly emailing and speaking to doctors -- and surprisingly, as jaded as some are, they are moved by Adam's story -- a human aspect often hits home even more than statistics. 3. Write your congressmen and thank them for supporting the Army funding or telling them about their constituents witht this disease, so the next time it's reviewed, they know it impacts their state. 4. Try to get friends and your companies to donate money to research -- the NF Foundation, NF Inc, the local hospital, eg Mass General who devotes quite a bit to NF2 research , or family funds--for those of you who don't know, there is the Adam Goodkind NF2 Research Fund at the NF Foundation -- devoted 100% to research grants -- I have told my family that any event, birthday, anniversary, first day of snow, whatever, make a donation to this Fund. 5. Fundraisers--wish I could think of something we could do on a national basis for awareness and money. Open to ideas here. My thoughts for the day Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Re: Clinical trials 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 10, 2000 Report Share Posted October 10, 2000 Re: Clinical trials 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 10, 2000 Report Share Posted October 10, 2000 Re: Clinical trials 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 10, 2000 Report Share Posted October 10, 2000 Her name just popped out on my tongue: It's Guillian , she plays the character FBI agent Dana Scully on the " X-Files " . Mark ----Original Message Follows---- From: adonai10@... Reply-To: NF2_Crewegroups To: NF2_Crewegroups Subject: Re: Clinical trials Date: Wed, 11 Oct 2000 00:06:17 EDT Its Jillian ? from that Sci Fi show and her brother doesn't have NF2, he has NF1 _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 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 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 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 Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, what to do, Barbara lin is probably the best source there. 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 10, 2000 Report Share Posted October 10, 2000 Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, what to do, Barbara lin is probably the best source there. 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 10, 2000 Report Share Posted October 10, 2000 Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, what to do, Barbara lin is probably the best source there. 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 10, 2000 Report Share Posted October 10, 2000 Marie...there is an actress who has been lobbying for us but I can't remember for the life of me who it is. Anybody else know or remember? I believe she has a brother with NF2. Carol Marie Drew wrote: > Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, > what to do, Barbara lin is probably the best source there. > 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 10, 2000 Report Share Posted October 10, 2000 Marie...there is an actress who has been lobbying for us but I can't remember for the life of me who it is. Anybody else know or remember? I believe she has a brother with NF2. Carol Marie Drew wrote: > Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, > what to do, Barbara lin is probably the best source there. > 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 10, 2000 Report Share Posted October 10, 2000 Marie...there is an actress who has been lobbying for us but I can't remember for the life of me who it is. Anybody else know or remember? I believe she has a brother with NF2. Carol Marie Drew wrote: > Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, > what to do, Barbara lin is probably the best source there. > 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 10, 2000 Report Share Posted October 10, 2000 Carol The actress is best know as Agent Dana Skully on X files. He brother has NF 1 Marnie At 10:26 PM 10/10/00 -0400, you wrote: >Marie...there is an actress who has been lobbying for us but I can't remember >for the life of me who it is. Anybody else know or remember? I believe she >has a >brother with NF2. > >Carol > >Marie Drew wrote: > > > Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, > > what to do, Barbara lin is probably the best source there. > > 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 10, 2000 Report Share Posted October 10, 2000 Carol The actress is best know as Agent Dana Skully on X files. He brother has NF 1 Marnie At 10:26 PM 10/10/00 -0400, you wrote: >Marie...there is an actress who has been lobbying for us but I can't remember >for the life of me who it is. Anybody else know or remember? I believe she >has a >brother with NF2. > >Carol > >Marie Drew wrote: > > > Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, > > what to do, Barbara lin is probably the best source there. > > 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 10, 2000 Report Share Posted October 10, 2000 Carol The actress is best know as Agent Dana Skully on X files. He brother has NF 1 Marnie At 10:26 PM 10/10/00 -0400, you wrote: >Marie...there is an actress who has been lobbying for us but I can't remember >for the life of me who it is. Anybody else know or remember? I believe she >has a >brother with NF2. > >Carol > >Marie Drew wrote: > > > Too bad J. Fox has Parkinson's instead of NF2! 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. As far as who to lobby, > > what to do, Barbara lin is probably the best source there. > > 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 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...
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