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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?

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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?

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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.

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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.

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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............

......

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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............

......

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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.

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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.

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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,

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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,

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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

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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

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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,

>

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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,

>

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& 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.

>

>

>

>

>

>

>

>

>

>

>

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& 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.

>

>

>

>

>

>

>

>

>

>

>

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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

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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

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Guest guest

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

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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.

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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.

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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.

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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.

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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.

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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.

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