Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Hi Rosemary, A couple years ago, Ken tried to put this kind of thing in place. The name that was used was an NF2 InfoBase. We were going to compile a database that had our collective experiences, indexed by a variety of topics. The info would be anonymously submitted and most importantly, would remain in the control of the Crew. It was an awesome idea, but right when Ken was getting it off the ground, he got hit VERY hard by a whole barrage of " inconveniences " (read life-threatening conditions when tossed on top of the NF2) that ended up killing him within two months. Huge personal loss for me. Nothing really materialized after we lost him. If you are interested, I can dig out the posts I have saved that have some of the details and guidelines that were discussed and agreed upon. I think you do have to be careful when doing this kind of thing (like it or not, research and medicine is big-business and we should not volunteer to be used and discarded at the whims of some researchers, but we need to establish that this sets up an interdependent relationship, based-on reciprocal arrangements). [The quote Marie submitted earilier today captures this sentiment.] My Best, Prowse wrote: > Collectively, we have a wealth of information here, and the > ability to hold polls and pass on this information. > I think we need to be a little bit more proactive in collating this > information and passing it on. That's our responsibility. > Are the experts right in their analysis of this disorder? They can only > deduce from the info in front of them and there is only 2-3 > population-based studies completed. > Is it true that it is not gender or race specific? Or is it predominantly a > white, western and from the reports I've read, males are overrepresented. > Is it 50/50 inherited and new genetic alterations or are there more new > genetic alterations as I suspect.....that's the sort of provacative > information that can speed up research!! > In inherited cases, does it run true in families, or is age of onset coming > forward. And so on and so on. > I've read so many reports where researchers are scrabbling to put together > their natural history on this disorder and I really think the crew has a > role here... > Rather than time and money consuming studies being undertaken to establish > all of this info and much more, we could expediate matters by preempting > their questions....in fact we could probably come up with a few lateral > pointers of our own. > can we have some polls? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Hi Rosemary, A couple years ago, Ken tried to put this kind of thing in place. The name that was used was an NF2 InfoBase. We were going to compile a database that had our collective experiences, indexed by a variety of topics. The info would be anonymously submitted and most importantly, would remain in the control of the Crew. It was an awesome idea, but right when Ken was getting it off the ground, he got hit VERY hard by a whole barrage of " inconveniences " (read life-threatening conditions when tossed on top of the NF2) that ended up killing him within two months. Huge personal loss for me. Nothing really materialized after we lost him. If you are interested, I can dig out the posts I have saved that have some of the details and guidelines that were discussed and agreed upon. I think you do have to be careful when doing this kind of thing (like it or not, research and medicine is big-business and we should not volunteer to be used and discarded at the whims of some researchers, but we need to establish that this sets up an interdependent relationship, based-on reciprocal arrangements). [The quote Marie submitted earilier today captures this sentiment.] My Best, Prowse wrote: > Collectively, we have a wealth of information here, and the > ability to hold polls and pass on this information. > I think we need to be a little bit more proactive in collating this > information and passing it on. That's our responsibility. > Are the experts right in their analysis of this disorder? They can only > deduce from the info in front of them and there is only 2-3 > population-based studies completed. > Is it true that it is not gender or race specific? Or is it predominantly a > white, western and from the reports I've read, males are overrepresented. > Is it 50/50 inherited and new genetic alterations or are there more new > genetic alterations as I suspect.....that's the sort of provacative > information that can speed up research!! > In inherited cases, does it run true in families, or is age of onset coming > forward. And so on and so on. > I've read so many reports where researchers are scrabbling to put together > their natural history on this disorder and I really think the crew has a > role here... > Rather than time and money consuming studies being undertaken to establish > all of this info and much more, we could expediate matters by preempting > their questions....in fact we could probably come up with a few lateral > pointers of our own. > can we have some polls? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 on 4/10/00 12:41 PM, Przybysz at .L.Przybysz.3@... wrote: > Hi Rosemary, A couple years ago, Ken tried to put this kind of thing > in place. > The name that was used was an NF2 InfoBase. We were going to compile a > database that > had our collective experiences, indexed by a variety of topics. The info > would be > anonymously submitted and most importantly, would remain in the control of the > Crew. It > was an awesome idea, but right when Ken was getting it off the ground, he got > hit VERY > hard by a whole barrage of " inconveniences " (read life-threatening conditions > when > tossed on top of the NF2) that ended up killing him within two months. Huge > personal > loss for me. Nothing really materialized after we lost him. > > If you are interested, I can dig out the posts I have saved that have some of > the > details and guidelines that were discussed and agreed upon. I think you do > have to be > careful when doing this kind of thing (like it or not, research and medicine > is > big-business and we should not volunteer to be used and discarded at the whims > of some > researchers, but we need to establish that this sets up an interdependent > relationship, > based-on reciprocal arrangements). [The quote Marie submitted earilier today > captures > this sentiment.] > > My Best, > > Prowse wrote: >> Collectively, we have a wealth of information here, and the >> ability to hold polls and pass on this information. >> I think we need to be a little bit more proactive in collating this >> information and passing it on. That's our responsibility. >> Are the experts right in their analysis of this disorder? They can only >> deduce from the info in front of them and there is only 2-3 >> population-based studies completed. >> Is it true that it is not gender or race specific? Or is it predominantly a >> white, western and from the reports I've read, males are overrepresented. >> Is it 50/50 inherited and new genetic alterations or are there more new >> genetic alterations as I suspect.....that's the sort of provacative >> information that can speed up research!! >> In inherited cases, does it run true in families, or is age of onset coming >> forward. And so on and so on. >> I've read so many reports where researchers are scrabbling to put together >> their natural history on this disorder and I really think the crew has a >> role here... >> Rather than time and money consuming studies being undertaken to establish >> all of this info and much more, we could expediate matters by preempting >> their questions....in fact we could probably come up with a few lateral >> pointers of our own. >> can we have some polls? > > dear , I agree, we must be careful. I would be very grateful if you could dig up this info. I'm sorry to hear about Ken. I " m sorry to read all the stories..... I can only aspire to the dignity and courage that many of you have shown. However, I also like Mia MaCollin's quote: Apathy is a dominant gene, mutate. If anybody would like to see what a small independent foundation, controlled by affected families can achieve, I suggest taking a look at the Myelin Project at www.myelin.org. Go to their last two reports and see how they have set up their own gene therapy human trials. How they have liased and gone abroad when things have become too restrictive in the USA. This is probably old news to you, but if not, I found it very inspiring. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 on 4/10/00 12:41 PM, Przybysz at .L.Przybysz.3@... wrote: > Hi Rosemary, A couple years ago, Ken tried to put this kind of thing > in place. > The name that was used was an NF2 InfoBase. We were going to compile a > database that > had our collective experiences, indexed by a variety of topics. The info > would be > anonymously submitted and most importantly, would remain in the control of the > Crew. It > was an awesome idea, but right when Ken was getting it off the ground, he got > hit VERY > hard by a whole barrage of " inconveniences " (read life-threatening conditions > when > tossed on top of the NF2) that ended up killing him within two months. Huge > personal > loss for me. Nothing really materialized after we lost him. > > If you are interested, I can dig out the posts I have saved that have some of > the > details and guidelines that were discussed and agreed upon. I think you do > have to be > careful when doing this kind of thing (like it or not, research and medicine > is > big-business and we should not volunteer to be used and discarded at the whims > of some > researchers, but we need to establish that this sets up an interdependent > relationship, > based-on reciprocal arrangements). [The quote Marie submitted earilier today > captures > this sentiment.] > > My Best, > > Prowse wrote: >> Collectively, we have a wealth of information here, and the >> ability to hold polls and pass on this information. >> I think we need to be a little bit more proactive in collating this >> information and passing it on. That's our responsibility. >> Are the experts right in their analysis of this disorder? They can only >> deduce from the info in front of them and there is only 2-3 >> population-based studies completed. >> Is it true that it is not gender or race specific? Or is it predominantly a >> white, western and from the reports I've read, males are overrepresented. >> Is it 50/50 inherited and new genetic alterations or are there more new >> genetic alterations as I suspect.....that's the sort of provacative >> information that can speed up research!! >> In inherited cases, does it run true in families, or is age of onset coming >> forward. And so on and so on. >> I've read so many reports where researchers are scrabbling to put together >> their natural history on this disorder and I really think the crew has a >> role here... >> Rather than time and money consuming studies being undertaken to establish >> all of this info and much more, we could expediate matters by preempting >> their questions....in fact we could probably come up with a few lateral >> pointers of our own. >> can we have some polls? > > dear , I agree, we must be careful. I would be very grateful if you could dig up this info. I'm sorry to hear about Ken. I " m sorry to read all the stories..... I can only aspire to the dignity and courage that many of you have shown. However, I also like Mia MaCollin's quote: Apathy is a dominant gene, mutate. If anybody would like to see what a small independent foundation, controlled by affected families can achieve, I suggest taking a look at the Myelin Project at www.myelin.org. Go to their last two reports and see how they have set up their own gene therapy human trials. How they have liased and gone abroad when things have become too restrictive in the USA. This is probably old news to you, but if not, I found it very inspiring. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Yes Rosemary, you can stop running because it's not going to help you.. Now get your head together and stop going into panic mode. This is another Ossie talking and I can be very blunt. I have been waiting for you to tell us the age of Louis and to get some more " NF2 " history. There is a reason why but I will make it another post if anyone wants to hear it. As you already know Bilateral Meningiomas becomes a NF2 suspicion put together with Bilateral " Juvenial posterior subcapsular lenticular opacity " (which still has to be confirmed) then YOU are looking down the barrel of NF2 because " Juvenial posterior subcapsular lenticular opacity " is a confirmed characteristic of NF2. Has Louis had a full head and spinal MRI???? because if he has and there are no other tumours showing then stop beating yourself up. Why you say, well they could be the only symptoms that he will have for a long time. It depends on the genetic malfunction, he may never get spinal tumours, and he may never get bilateral Vestibular Schwannomas (acoustic neuromas) because that part of his genetic makeup in the NF2 gene may not effected. Yes he will have to have MRIs 2 to 4 times a year while he is young to watch for any change in the tumours that he has and any new tumours that may developed in the future. Research is happening and like all research it is SLOW work. I don't know where you got the idea that they have NF2 mouse models for years, because it was only announced last year. There will be a NF2 specific drug before there is NF2 gene-therapy. Another thing is --- There IS no NF2 research in Australia, and only a very little on NF1. If the knowledge of NF2 in the medical profession in Australia could be " related " to having a baby, they would be at the " foreplay " stage. I'll leave it to others to inform you about the other stuff............ ...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Yes Rosemary, you can stop running because it's not going to help you.. Now get your head together and stop going into panic mode. This is another Ossie talking and I can be very blunt. I have been waiting for you to tell us the age of Louis and to get some more " NF2 " history. There is a reason why but I will make it another post if anyone wants to hear it. As you already know Bilateral Meningiomas becomes a NF2 suspicion put together with Bilateral " Juvenial posterior subcapsular lenticular opacity " (which still has to be confirmed) then YOU are looking down the barrel of NF2 because " Juvenial posterior subcapsular lenticular opacity " is a confirmed characteristic of NF2. Has Louis had a full head and spinal MRI???? because if he has and there are no other tumours showing then stop beating yourself up. Why you say, well they could be the only symptoms that he will have for a long time. It depends on the genetic malfunction, he may never get spinal tumours, and he may never get bilateral Vestibular Schwannomas (acoustic neuromas) because that part of his genetic makeup in the NF2 gene may not effected. Yes he will have to have MRIs 2 to 4 times a year while he is young to watch for any change in the tumours that he has and any new tumours that may developed in the future. Research is happening and like all research it is SLOW work. I don't know where you got the idea that they have NF2 mouse models for years, because it was only announced last year. There will be a NF2 specific drug before there is NF2 gene-therapy. Another thing is --- There IS no NF2 research in Australia, and only a very little on NF1. If the knowledge of NF2 in the medical profession in Australia could be " related " to having a baby, they would be at the " foreplay " stage. I'll leave it to others to inform you about the other stuff............ ...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 on 4/10/00 1:35 PM, Cross at bacross@... wrote: > Yes Rosemary, you can stop running because it's not going to help you.. > Now get your head together and stop going into panic mode. This is another > Ossie talking and I can be very blunt. > I have been waiting for you to tell us the age of Louis and to get some more > " NF2 " history. > There is a reason why but I will make it another post if anyone wants to > hear it. > As you already know Bilateral Meningiomas becomes a NF2 suspicion put > together with Bilateral " Juvenial posterior subcapsular lenticular opacity " > (which still has to be confirmed) then YOU are looking down the barrel of > NF2 because " Juvenial posterior subcapsular lenticular opacity " is a > confirmed characteristic of NF2. > Has Louis had a full head and spinal MRI???? because if he has and there are > no other tumours showing then stop beating yourself up. Why you say, well > they could be the only symptoms that he will have for a long time. It > depends on the genetic malfunction, he may never get spinal tumours, and he > may never get bilateral Vestibular Schwannomas (acoustic neuromas) because > that part of his genetic makeup in the NF2 gene may not effected. > Yes he will have to have MRIs 2 to 4 times a year while he is young to watch > for any change in the tumours that he has and any new tumours that may > developed in the future. > Research is happening and like all research it is SLOW work. > I don't know where you got the idea that they have NF2 mouse models for > years, because it was only announced last year. > There will be a NF2 specific drug before there is NF2 gene-therapy. > Another thing is --- There IS no NF2 research in Australia, and only a very > little on NF1. > If the knowledge of NF2 in the medical profession in Australia could be > " related " to having a baby, they would be at the " foreplay " stage. > I'll leave it to others to inform you about the other stuff............ > ...... > > > , Louis is 7. All the ophthalmoligists at Westmead believe this is a juvenile posterior subcapsular cataract, it's just that I don't have complete faith in them. They have never seen them before.....yes they are on the back of the lens,yes any opacity is a cataract. I get the idea that they have been using the mouse models from reading the Medline reports. Yes, I agree. they will develop adrug first. It is my understanding that they announced last year(99 Foundation Symposium) the commencement of a few human drug trials for Nf2 and considerably more for NF1. I am not that interested in the drug trials, I find there is always unacceptable side-affects. But I wouldn't knock it back..... And I don't know where you got the idea that I said there was research being done here....there is none as far as I can make out. Perhaps you misunderstood the bit about the enquiries and projected costs I was given from a research lab here.... By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 on 4/10/00 1:35 PM, Cross at bacross@... wrote: > Yes Rosemary, you can stop running because it's not going to help you.. > Now get your head together and stop going into panic mode. This is another > Ossie talking and I can be very blunt. > I have been waiting for you to tell us the age of Louis and to get some more > " NF2 " history. > There is a reason why but I will make it another post if anyone wants to > hear it. > As you already know Bilateral Meningiomas becomes a NF2 suspicion put > together with Bilateral " Juvenial posterior subcapsular lenticular opacity " > (which still has to be confirmed) then YOU are looking down the barrel of > NF2 because " Juvenial posterior subcapsular lenticular opacity " is a > confirmed characteristic of NF2. > Has Louis had a full head and spinal MRI???? because if he has and there are > no other tumours showing then stop beating yourself up. Why you say, well > they could be the only symptoms that he will have for a long time. It > depends on the genetic malfunction, he may never get spinal tumours, and he > may never get bilateral Vestibular Schwannomas (acoustic neuromas) because > that part of his genetic makeup in the NF2 gene may not effected. > Yes he will have to have MRIs 2 to 4 times a year while he is young to watch > for any change in the tumours that he has and any new tumours that may > developed in the future. > Research is happening and like all research it is SLOW work. > I don't know where you got the idea that they have NF2 mouse models for > years, because it was only announced last year. > There will be a NF2 specific drug before there is NF2 gene-therapy. > Another thing is --- There IS no NF2 research in Australia, and only a very > little on NF1. > If the knowledge of NF2 in the medical profession in Australia could be > " related " to having a baby, they would be at the " foreplay " stage. > I'll leave it to others to inform you about the other stuff............ > ...... > > > , Louis is 7. All the ophthalmoligists at Westmead believe this is a juvenile posterior subcapsular cataract, it's just that I don't have complete faith in them. They have never seen them before.....yes they are on the back of the lens,yes any opacity is a cataract. I get the idea that they have been using the mouse models from reading the Medline reports. Yes, I agree. they will develop adrug first. It is my understanding that they announced last year(99 Foundation Symposium) the commencement of a few human drug trials for Nf2 and considerably more for NF1. I am not that interested in the drug trials, I find there is always unacceptable side-affects. But I wouldn't knock it back..... And I don't know where you got the idea that I said there was research being done here....there is none as far as I can make out. Perhaps you misunderstood the bit about the enquiries and projected costs I was given from a research lab here.... By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 I'll look for the info in the old posts in the next couple days and get those to you as I find them. Prowse wrote: > I'm sorry to hear about Ken. I " m sorry to read all the stories..... > I can only aspire to the dignity and courage that many of you have shown. > > However, I also like Mia MaCollin's quote: Apathy is a dominant gene, > mutate. Whoa, wait a minute there... who said anything about not caring?! The thing is, we are attempting to accomplish several things here at once and it requires a delicate balance. If you put too much of your attention on times and places outside the one you're living in, you end up missing what it means to live. It's going to take some time for " the cure " to come and it's not something we're going to be able to force (as much as we would like to--if for nothing else to keep our friends in our midst)... in the meantime, you can bet your sweet dupa I'm going to make the most of what I have (in a meaningful way) with the people who are around me *now*. Life is too precious of a gift to spend it in constant want of something that's thought to be " better " ... only to get it and discover it wasn't what we thought it would be. We deal with some very real, immediate threats to our lives. Focusing all our time and energy on a cure that will take some time to develop diverts much needed physical and mental resources from where they can do the most good. Does that make any sense? I will keep you and Louis in my thoughts and I'll be in touch in the next few days with the old messages... My Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 I'll look for the info in the old posts in the next couple days and get those to you as I find them. Prowse wrote: > I'm sorry to hear about Ken. I " m sorry to read all the stories..... > I can only aspire to the dignity and courage that many of you have shown. > > However, I also like Mia MaCollin's quote: Apathy is a dominant gene, > mutate. Whoa, wait a minute there... who said anything about not caring?! The thing is, we are attempting to accomplish several things here at once and it requires a delicate balance. If you put too much of your attention on times and places outside the one you're living in, you end up missing what it means to live. It's going to take some time for " the cure " to come and it's not something we're going to be able to force (as much as we would like to--if for nothing else to keep our friends in our midst)... in the meantime, you can bet your sweet dupa I'm going to make the most of what I have (in a meaningful way) with the people who are around me *now*. Life is too precious of a gift to spend it in constant want of something that's thought to be " better " ... only to get it and discover it wasn't what we thought it would be. We deal with some very real, immediate threats to our lives. Focusing all our time and energy on a cure that will take some time to develop diverts much needed physical and mental resources from where they can do the most good. Does that make any sense? I will keep you and Louis in my thoughts and I'll be in touch in the next few days with the old messages... My Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, pandl@... writes: << By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. >> What does this mean? I was under the impression that tumors could be of any size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. I've also seen older folks that have smaller tumors. So, what do you mean by this statement, Rosemary? Thanks for the help. I'm curious... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, pandl@... writes: << By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. >> What does this mean? I was under the impression that tumors could be of any size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. I've also seen older folks that have smaller tumors. So, what do you mean by this statement, Rosemary? Thanks for the help. I'm curious... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Hi, Marie here; as everyone knows I am no computer guru; but if I could help in any way with a project like this, I would be willing. Marie Re: help >Hi Rosemary, A couple years ago, Ken tried to put this kind of thing in place. >The name that was used was an NF2 InfoBase. We were going to compile a database that >had our collective experiences, indexed by a variety of topics. The info would be >anonymously submitted and most importantly, would remain in the control of the Crew. It >was an awesome idea, but right when Ken was getting it off the ground, he got hit VERY >hard by a whole barrage of " inconveniences " (read life-threatening conditions when >tossed on top of the NF2) that ended up killing him within two months. Huge personal >loss for me. Nothing really materialized after we lost him. > >If you are interested, I can dig out the posts I have saved that have some of the >details and guidelines that were discussed and agreed upon. I think you do have to be >careful when doing this kind of thing (like it or not, research and medicine is >big-business and we should not volunteer to be used and discarded at the whims of some >researchers, but we need to establish that this sets up an interdependent relationship, >based-on reciprocal arrangements). [The quote Marie submitted earilier today captures >this sentiment.] > >My Best, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Hi, Marie here; as everyone knows I am no computer guru; but if I could help in any way with a project like this, I would be willing. Marie Re: help >Hi Rosemary, A couple years ago, Ken tried to put this kind of thing in place. >The name that was used was an NF2 InfoBase. We were going to compile a database that >had our collective experiences, indexed by a variety of topics. The info would be >anonymously submitted and most importantly, would remain in the control of the Crew. It >was an awesome idea, but right when Ken was getting it off the ground, he got hit VERY >hard by a whole barrage of " inconveniences " (read life-threatening conditions when >tossed on top of the NF2) that ended up killing him within two months. Huge personal >loss for me. Nothing really materialized after we lost him. > >If you are interested, I can dig out the posts I have saved that have some of the >details and guidelines that were discussed and agreed upon. I think you do have to be >careful when doing this kind of thing (like it or not, research and medicine is >big-business and we should not volunteer to be used and discarded at the whims of some >researchers, but we need to establish that this sets up an interdependent relationship, >based-on reciprocal arrangements). [The quote Marie submitted earilier today captures >this sentiment.] > >My Best, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 & Crew -- I saw a TV movie about one of the families involved with this founsation. The movie was titled, " Lorenzo's Oil. " An address or phone number, I can't remember which was given at the end of the movie. It's a powerful story of what one motivated individual or family can do. K. Re: help > on 4/10/00 12:41 PM, Przybysz at .L.Przybysz.3@... wrote: > > > Hi Rosemary, A couple years ago, Ken tried to put this kind of thing > > in place. > > The name that was used was an NF2 InfoBase. We were going to compile a > > database that > > had our collective experiences, indexed by a variety of topics. The info > > would be > > anonymously submitted and most importantly, would remain in the control of the > > Crew. It > > was an awesome idea, but right when Ken was getting it off the ground, he got > > hit VERY > > hard by a whole barrage of " inconveniences " (read life-threatening conditions > > when > > tossed on top of the NF2) that ended up killing him within two months. Huge > > personal > > loss for me. Nothing really materialized after we lost him. > > > > If you are interested, I can dig out the posts I have saved that have some of > > the > > details and guidelines that were discussed and agreed upon. I think you do > > have to be > > careful when doing this kind of thing (like it or not, research and medicine > > is > > big-business and we should not volunteer to be used and discarded at the whims > > of some > > researchers, but we need to establish that this sets up an interdependent > > relationship, > > based-on reciprocal arrangements). [The quote Marie submitted earilier today > > captures > > this sentiment.] > > > > My Best, > > > > Prowse wrote: > >> Collectively, we have a wealth of information here, and the > >> ability to hold polls and pass on this information. > >> I think we need to be a little bit more proactive in collating this > >> information and passing it on. That's our responsibility. > >> Are the experts right in their analysis of this disorder? They can only > >> deduce from the info in front of them and there is only 2-3 > >> population-based studies completed. > >> Is it true that it is not gender or race specific? Or is it predominantly a > >> white, western and from the reports I've read, males are overrepresented. > >> Is it 50/50 inherited and new genetic alterations or are there more new > >> genetic alterations as I suspect.....that's the sort of provacative > >> information that can speed up research!! > >> In inherited cases, does it run true in families, or is age of onset coming > >> forward. And so on and so on. > >> I've read so many reports where researchers are scrabbling to put together > >> their natural history on this disorder and I really think the crew has a > >> role here... > >> Rather than time and money consuming studies being undertaken to establish > >> all of this info and much more, we could expediate matters by preempting > >> their questions....in fact we could probably come up with a few lateral > >> pointers of our own. > >> can we have some polls? > > > > > dear , > > I agree, we must be careful. > > I would be very grateful if you could dig up this info. > > I'm sorry to hear about Ken. I " m sorry to read all the stories..... > I can only aspire to the dignity and courage that many of you have shown. > > However, I also like Mia MaCollin's quote: Apathy is a dominant gene, > mutate. > > If anybody would like to see what a small independent foundation, controlled > by affected families can achieve, I suggest taking a look at the Myelin > Project at www.myelin.org. Go to their last two reports and see how they > have set up their own gene therapy human trials. How they have liased and > gone abroad when things have become too restrictive in the USA. This is > probably old news to you, but if not, I found it very inspiring. > Rosemary. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 & Crew -- I saw a TV movie about one of the families involved with this founsation. The movie was titled, " Lorenzo's Oil. " An address or phone number, I can't remember which was given at the end of the movie. It's a powerful story of what one motivated individual or family can do. K. Re: help > on 4/10/00 12:41 PM, Przybysz at .L.Przybysz.3@... wrote: > > > Hi Rosemary, A couple years ago, Ken tried to put this kind of thing > > in place. > > The name that was used was an NF2 InfoBase. We were going to compile a > > database that > > had our collective experiences, indexed by a variety of topics. The info > > would be > > anonymously submitted and most importantly, would remain in the control of the > > Crew. It > > was an awesome idea, but right when Ken was getting it off the ground, he got > > hit VERY > > hard by a whole barrage of " inconveniences " (read life-threatening conditions > > when > > tossed on top of the NF2) that ended up killing him within two months. Huge > > personal > > loss for me. Nothing really materialized after we lost him. > > > > If you are interested, I can dig out the posts I have saved that have some of > > the > > details and guidelines that were discussed and agreed upon. I think you do > > have to be > > careful when doing this kind of thing (like it or not, research and medicine > > is > > big-business and we should not volunteer to be used and discarded at the whims > > of some > > researchers, but we need to establish that this sets up an interdependent > > relationship, > > based-on reciprocal arrangements). [The quote Marie submitted earilier today > > captures > > this sentiment.] > > > > My Best, > > > > Prowse wrote: > >> Collectively, we have a wealth of information here, and the > >> ability to hold polls and pass on this information. > >> I think we need to be a little bit more proactive in collating this > >> information and passing it on. That's our responsibility. > >> Are the experts right in their analysis of this disorder? They can only > >> deduce from the info in front of them and there is only 2-3 > >> population-based studies completed. > >> Is it true that it is not gender or race specific? Or is it predominantly a > >> white, western and from the reports I've read, males are overrepresented. > >> Is it 50/50 inherited and new genetic alterations or are there more new > >> genetic alterations as I suspect.....that's the sort of provacative > >> information that can speed up research!! > >> In inherited cases, does it run true in families, or is age of onset coming > >> forward. And so on and so on. > >> I've read so many reports where researchers are scrabbling to put together > >> their natural history on this disorder and I really think the crew has a > >> role here... > >> Rather than time and money consuming studies being undertaken to establish > >> all of this info and much more, we could expediate matters by preempting > >> their questions....in fact we could probably come up with a few lateral > >> pointers of our own. > >> can we have some polls? > > > > > dear , > > I agree, we must be careful. > > I would be very grateful if you could dig up this info. > > I'm sorry to hear about Ken. I " m sorry to read all the stories..... > I can only aspire to the dignity and courage that many of you have shown. > > However, I also like Mia MaCollin's quote: Apathy is a dominant gene, > mutate. > > If anybody would like to see what a small independent foundation, controlled > by affected families can achieve, I suggest taking a look at the Myelin > Project at www.myelin.org. Go to their last two reports and see how they > have set up their own gene therapy human trials. How they have liased and > gone abroad when things have become too restrictive in the USA. This is > probably old news to you, but if not, I found it very inspiring. > Rosemary. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 June, That is my understanding too. There's no logic to this and no predictability. ---------- From: Boob1188@... Sent: Wednesday, October 04, 2000 1:42 PM To: NF2_Crewegroups Subject: Re: help In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, pandl@... writes: << By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. >> What does this mean? I was under the impression that tumors could be of any size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. I've also seen older folks that have smaller tumors. So, what do you mean by this statement, Rosemary? Thanks for the help. I'm curious... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 June, That is my understanding too. There's no logic to this and no predictability. ---------- From: Boob1188@... Sent: Wednesday, October 04, 2000 1:42 PM To: NF2_Crewegroups Subject: Re: help In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, pandl@... writes: << By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. >> What does this mean? I was under the impression that tumors could be of any size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. I've also seen older folks that have smaller tumors. So, what do you mean by this statement, Rosemary? Thanks for the help. I'm curious... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 June, That is my understanding too. There's no logic to this and no predictability. ---------- From: Boob1188@... Sent: Wednesday, October 04, 2000 1:42 PM To: NF2_Crewegroups Subject: Re: help In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, pandl@... writes: << By the way ,you could have done the maths on his tumor size and worked out his age ...... Rosemary. >> What does this mean? I was under the impression that tumors could be of any size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. I've also seen older folks that have smaller tumors. So, what do you mean by this statement, Rosemary? Thanks for the help. I'm curious... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 on 5/10/00 3:42 AM, Boob1188@... at Boob1188@... wrote: > In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, > pandl@... writes: > > << By the way ,you could have done the maths on his tumor size and worked out > his age ...... > Rosemary. >>> > > What does this mean? I was under the impression that tumors could be of any > size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. > I've also seen older folks that have smaller tumors. So, what do you mean by > this statement, Rosemary? > > Thanks for the help. I'm curious... > > June > > Dear June, I was referring to an average growth rate of 2mm a year that I had read somewhere. Understand that given Louis's presentation, initially I read a lot about sporadic meningiomas(NonNF2). Then I read the studies that compared sporadic meningiomas (and often schwannomas) with Nf2 tumors. This one was quite useful..... ethesis.helsinki.fi/julkaisut/laa/haart/vk/antinheimo (I think it was this one, there are two ethesis' from Helsinki. It was also the first one that I read that clearly stated that rapid multiple tumor growth is associated with the most severe disorder course(combined with early onset). This probably sounds like I'm stupid but prior to this I wasn't sure whether they were talking about rapid growth of multiple tumors(be they small or large) or multiple tumors that grow very rapidly.......Now , you will think I'm mad. Anyway, I've since learnt from the crew the varied spectrum of tumor growth with Nf2. I think the periods of activity and dormancy are interesting. Has anyone monitored this and associated a reason? Have any of those children with fast-growing tumors settled down to the slow-growing tumors that the experts say characterize the disorder??? Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 on 5/10/00 3:42 AM, Boob1188@... at Boob1188@... wrote: > In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, > pandl@... writes: > > << By the way ,you could have done the maths on his tumor size and worked out > his age ...... > Rosemary. >>> > > What does this mean? I was under the impression that tumors could be of any > size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. > I've also seen older folks that have smaller tumors. So, what do you mean by > this statement, Rosemary? > > Thanks for the help. I'm curious... > > June > > Dear June, I was referring to an average growth rate of 2mm a year that I had read somewhere. Understand that given Louis's presentation, initially I read a lot about sporadic meningiomas(NonNF2). Then I read the studies that compared sporadic meningiomas (and often schwannomas) with Nf2 tumors. This one was quite useful..... ethesis.helsinki.fi/julkaisut/laa/haart/vk/antinheimo (I think it was this one, there are two ethesis' from Helsinki. It was also the first one that I read that clearly stated that rapid multiple tumor growth is associated with the most severe disorder course(combined with early onset). This probably sounds like I'm stupid but prior to this I wasn't sure whether they were talking about rapid growth of multiple tumors(be they small or large) or multiple tumors that grow very rapidly.......Now , you will think I'm mad. Anyway, I've since learnt from the crew the varied spectrum of tumor growth with Nf2. I think the periods of activity and dormancy are interesting. Has anyone monitored this and associated a reason? Have any of those children with fast-growing tumors settled down to the slow-growing tumors that the experts say characterize the disorder??? Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 on 5/10/00 3:42 AM, Boob1188@... at Boob1188@... wrote: > In a message dated 10/04/2000 12:41:31 AM Eastern Daylight Time, > pandl@... writes: > > << By the way ,you could have done the maths on his tumor size and worked out > his age ...... > Rosemary. >>> > > What does this mean? I was under the impression that tumors could be of any > size, ANYTIME. I've heard of young kids with BIG tomors, here on the Crew. > I've also seen older folks that have smaller tumors. So, what do you mean by > this statement, Rosemary? > > Thanks for the help. I'm curious... > > June > > Dear June, I was referring to an average growth rate of 2mm a year that I had read somewhere. Understand that given Louis's presentation, initially I read a lot about sporadic meningiomas(NonNF2). Then I read the studies that compared sporadic meningiomas (and often schwannomas) with Nf2 tumors. This one was quite useful..... ethesis.helsinki.fi/julkaisut/laa/haart/vk/antinheimo (I think it was this one, there are two ethesis' from Helsinki. It was also the first one that I read that clearly stated that rapid multiple tumor growth is associated with the most severe disorder course(combined with early onset). This probably sounds like I'm stupid but prior to this I wasn't sure whether they were talking about rapid growth of multiple tumors(be they small or large) or multiple tumors that grow very rapidly.......Now , you will think I'm mad. Anyway, I've since learnt from the crew the varied spectrum of tumor growth with Nf2. I think the periods of activity and dormancy are interesting. Has anyone monitored this and associated a reason? Have any of those children with fast-growing tumors settled down to the slow-growing tumors that the experts say characterize the disorder??? Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 on 4/10/00 11:43 PM, Marie Drew at mcdrew@... wrote: > Hi, Marie here; as everyone knows I am no computer guru; but if I could help > in any way with a project like this, I would be willing. Marie > Re: help > > >> Hi Rosemary, A couple years ago, Ken tried to put this kind of > thing in place. >> The name that was used was an NF2 InfoBase. We were going to compile a > database that >> had our collective experiences, indexed by a variety of topics. The info > would be >> anonymously submitted and most importantly, would remain in the control of > the Crew. It >> was an awesome idea, but right when Ken was getting it off the ground, he > got hit VERY >> hard by a whole barrage of " inconveniences " (read life-threatening > conditions when >> tossed on top of the NF2) that ended up killing him within two months. > Huge personal >> loss for me. Nothing really materialized after we lost him. >> >> If you are interested, I can dig out the posts I have saved that have some > of the >> details and guidelines that were discussed and agreed upon. I think you do > have to be >> careful when doing this kind of thing (like it or not, research and > medicine is >> big-business and we should not volunteer to be used and discarded at the > whims of some >> researchers, but we need to establish that this sets up an interdependent > relationship, >> based-on reciprocal arrangements). [The quote Marie submitted earilier > today captures >> this sentiment.] >> >> My Best, >> > > > Dear Marie, I'm no computer guru either...... I have only used email and the net since returning from hospital. I am a mother of three and I manage our farm. Computers, apart from accounts, were not big in my life. This is obviously an idea that you had all thought of before, and whilst it is not ground-breaking, it could be helpful in speeding up the experts analysis of the natural history of Nf2. Rosemary. Dear , I'm sorry, Mia's quote from me must have offended you. There is nothing apathetic about having Nf2. It seems to me it is an ongoing daily battle which is, apart from everything else(!!), time -consuming. And you are so right about living in the moment and appreciating the love and life around you..... I really, really didn't mean to imply that you or anyone else was being apathetic or " uncaring " . You most definitely have got your priorities right. I found this quote inspirational for me. I don't have Nf2, I am strong and well. I have a son who is strong and well (actually2), at least until we have our next op. This time next year, I may not have this time and energy. Use me. I have also found what other foundations have achieved as inspirational. And have to admit that I find this frustrating when compared to the amount of money and research that has gone into NF2 research( ie.lack of therapies). But maybe I just don't know enough yet. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 on 4/10/00 11:43 PM, Marie Drew at mcdrew@... wrote: > Hi, Marie here; as everyone knows I am no computer guru; but if I could help > in any way with a project like this, I would be willing. Marie > Re: help > > >> Hi Rosemary, A couple years ago, Ken tried to put this kind of > thing in place. >> The name that was used was an NF2 InfoBase. We were going to compile a > database that >> had our collective experiences, indexed by a variety of topics. The info > would be >> anonymously submitted and most importantly, would remain in the control of > the Crew. It >> was an awesome idea, but right when Ken was getting it off the ground, he > got hit VERY >> hard by a whole barrage of " inconveniences " (read life-threatening > conditions when >> tossed on top of the NF2) that ended up killing him within two months. > Huge personal >> loss for me. Nothing really materialized after we lost him. >> >> If you are interested, I can dig out the posts I have saved that have some > of the >> details and guidelines that were discussed and agreed upon. I think you do > have to be >> careful when doing this kind of thing (like it or not, research and > medicine is >> big-business and we should not volunteer to be used and discarded at the > whims of some >> researchers, but we need to establish that this sets up an interdependent > relationship, >> based-on reciprocal arrangements). [The quote Marie submitted earilier > today captures >> this sentiment.] >> >> My Best, >> > > > Dear Marie, I'm no computer guru either...... I have only used email and the net since returning from hospital. I am a mother of three and I manage our farm. Computers, apart from accounts, were not big in my life. This is obviously an idea that you had all thought of before, and whilst it is not ground-breaking, it could be helpful in speeding up the experts analysis of the natural history of Nf2. Rosemary. Dear , I'm sorry, Mia's quote from me must have offended you. There is nothing apathetic about having Nf2. It seems to me it is an ongoing daily battle which is, apart from everything else(!!), time -consuming. And you are so right about living in the moment and appreciating the love and life around you..... I really, really didn't mean to imply that you or anyone else was being apathetic or " uncaring " . You most definitely have got your priorities right. I found this quote inspirational for me. I don't have Nf2, I am strong and well. I have a son who is strong and well (actually2), at least until we have our next op. This time next year, I may not have this time and energy. Use me. I have also found what other foundations have achieved as inspirational. And have to admit that I find this frustrating when compared to the amount of money and research that has gone into NF2 research( ie.lack of therapies). But maybe I just don't know enough yet. Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 on 4/10/00 11:43 PM, Marie Drew at mcdrew@... wrote: > Hi, Marie here; as everyone knows I am no computer guru; but if I could help > in any way with a project like this, I would be willing. Marie > Re: help > > >> Hi Rosemary, A couple years ago, Ken tried to put this kind of > thing in place. >> The name that was used was an NF2 InfoBase. We were going to compile a > database that >> had our collective experiences, indexed by a variety of topics. The info > would be >> anonymously submitted and most importantly, would remain in the control of > the Crew. It >> was an awesome idea, but right when Ken was getting it off the ground, he > got hit VERY >> hard by a whole barrage of " inconveniences " (read life-threatening > conditions when >> tossed on top of the NF2) that ended up killing him within two months. > Huge personal >> loss for me. Nothing really materialized after we lost him. >> >> If you are interested, I can dig out the posts I have saved that have some > of the >> details and guidelines that were discussed and agreed upon. I think you do > have to be >> careful when doing this kind of thing (like it or not, research and > medicine is >> big-business and we should not volunteer to be used and discarded at the > whims of some >> researchers, but we need to establish that this sets up an interdependent > relationship, >> based-on reciprocal arrangements). [The quote Marie submitted earilier > today captures >> this sentiment.] >> >> My Best, >> > > > Dear Marie, I'm no computer guru either...... I have only used email and the net since returning from hospital. I am a mother of three and I manage our farm. Computers, apart from accounts, were not big in my life. This is obviously an idea that you had all thought of before, and whilst it is not ground-breaking, it could be helpful in speeding up the experts analysis of the natural history of Nf2. Rosemary. Dear , I'm sorry, Mia's quote from me must have offended you. There is nothing apathetic about having Nf2. It seems to me it is an ongoing daily battle which is, apart from everything else(!!), time -consuming. And you are so right about living in the moment and appreciating the love and life around you..... I really, really didn't mean to imply that you or anyone else was being apathetic or " uncaring " . You most definitely have got your priorities right. I found this quote inspirational for me. I don't have Nf2, I am strong and well. I have a son who is strong and well (actually2), at least until we have our next op. This time next year, I may not have this time and energy. Use me. I have also found what other foundations have achieved as inspirational. And have to admit that I find this frustrating when compared to the amount of money and research that has gone into NF2 research( ie.lack of therapies). But maybe I just don't know enough yet. Rosemary. Quote Link to comment Share on other sites More sharing options...
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