Re: ALDAcon workshops...lacking

[Guest guest]

first of, i do not go to theseALDA things but thought id maybe lend a thought

or two

while " whats your beef may be a good discussion I would think the purpose of

an NF2 workshop would be to educate those who are curious and do not have

nf2, such as " who are those people with half smiles " (or a catchy title but

my sense of humor is kinda absent lately)

put together some literature and share with others what it has been like to

have NF2, and not all the bad stuff thatwould make people pity us, you know

what I mean?? Everyone thre is late deafend so you cant get up andsay, " oh

my god its sooo hard to become deaf after so many years of hearing "

obviously most everyone there will know the feeeling

oh well i sure would be curious if any crewbie put a workshop together and

how it turns out

Caren

In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

writes:

<< My suggestion for the panel would be " What's your

Beef " about NF2; panel members each say what has been hardest for them to

deal with with NF2, and then see if anyone has any suggestions; then open it

up to the attendees and see what their beef is?

Marie >>

[Guest guest]

first of, i do not go to theseALDA things but thought id maybe lend a thought

or two

while " whats your beef may be a good discussion I would think the purpose of

an NF2 workshop would be to educate those who are curious and do not have

nf2, such as " who are those people with half smiles " (or a catchy title but

my sense of humor is kinda absent lately)

put together some literature and share with others what it has been like to

have NF2, and not all the bad stuff thatwould make people pity us, you know

what I mean?? Everyone thre is late deafend so you cant get up andsay, " oh

my god its sooo hard to become deaf after so many years of hearing "

obviously most everyone there will know the feeeling

oh well i sure would be curious if any crewbie put a workshop together and

how it turns out

Caren

In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

writes:

<< My suggestion for the panel would be " What's your

Beef " about NF2; panel members each say what has been hardest for them to

deal with with NF2, and then see if anyone has any suggestions; then open it

up to the attendees and see what their beef is?

Marie >>

[Guest guest]

Ouch, I am sorry to hear you had low response. I had contacted Dr. Dilys

Parry, and she said her plans were undecided at that time; and I had

contacted Mia Mac Collin, a researcher at Mass Gen. I am willing to help

with an NF2 workshop, maybe members of the Crew have an idea what they would

like the " panel " to discuss?

Marie Drew

ALDAcon workshops...lacking

>Hi Crew,

>

>Been a while since I wrote but I do get the digest and read the

>postings...well, most of them, grin.

>

>Anyway, for those of you that don't know, I am the President of the

>Association of Late-Deafened Adults, Inc. (ALDA).

>

>This year, the 12th International Convention of ALDA will be in Santa Fe,

New

>Mexico, Nov 1-5, 2000. For more info, see www.alda.org

>

>I am writing because we have had a low response in workshop proposals

>specifically related to NF-2. Would one or some of you be interested in

doing

>a workshop..maybe a panel? How about something related to... " How is Nf-2

>related deafness unique? " or... " Who are all of these people with

half-smiles

>at ALDAcon? " Grin.

>

>Let me know if any of you are interested. I might be able to join a panel

or

>help with a workshop. I think it is important we have something for those

>attending with NF-2 AND everyone else.

>

>Thanks much,

>Ken Arcia - President

>ALDA Inc.

>

>

>

>

[Guest guest]

KEN,HI! I would love to be on the panel! Can you tell me how much the

conference costs? I live now in Ohio-near Columbus. Any guess on

airfare!? I don't have alot of money now, I need to live in a nursing

home now. My NF disease is worse and not for Chicago. I sure miss

ALDA... Let me know any info. you can! talk to you later!@

Stay Strong,

Tracey

[Guest guest]

KEN,HI! I would love to be on the panel! Can you tell me how much the

conference costs? I live now in Ohio-near Columbus. Any guess on

airfare!? I don't have alot of money now, I need to live in a nursing

home now. My NF disease is worse and not for Chicago. I sure miss

ALDA... Let me know any info. you can! talk to you later!@

Stay Strong,

Tracey

[Guest guest]

Ken,

I'm curious. If one is a workshop presenter or is on a panel, does ALDA

help with any of the con related expenses ?

K.

ALDAcon workshops...lacking

>Hi Crew,

>

>Been a while since I wrote but I do get the digest and read the

>postings...well, most of them, grin.

>

>Anyway, for those of you that don't know, I am the President of the

>Association of Late-Deafened Adults, Inc. (ALDA).

>

>This year, the 12th International Convention of ALDA will be in Santa Fe,

New

>Mexico, Nov 1-5, 2000. For more info, see www.alda.org

>

>I am writing because we have had a low response in workshop proposals

>specifically related to NF-2. Would one or some of you be interested in

doing

>a workshop..maybe a panel? How about something related to... " How is Nf-2

>related deafness unique? " or... " Who are all of these people with

half-smiles

>at ALDAcon? " Grin.

>

>Let me know if any of you are interested. I might be able to join a panel

or

>help with a workshop. I think it is important we have something for those

>attending with NF-2 AND everyone else.

>

>Thanks much,

>Ken Arcia - President

>ALDA Inc.

>

>

>

>

[Guest guest]

, some of us have gotten good deals recently out of Clevleand or

Columbus for about $225. My suggestion for the panel would be " What's your

Beef " about NF2; panel members each say what has been hardest for them to

deal with with NF2, and then see if anyone has any suggestions; then open it

up to the attendees and see what their beef is?

Marie

Re: ALDAcon workshops...lacking

>KEN,HI! I would love to be on the panel! Can you tell me how much the

>conference costs? I live now in Ohio-near Columbus. Any guess on

>airfare!? I don't have alot of money now, I need to live in a nursing

>home now. My NF disease is worse and not for Chicago. I sure miss

>ALDA... Let me know any info. you can! talk to you later!@

>Stay Strong,

> Tracey

>

>

>

>

>

[Guest guest]

Well that's a good point Caren; However, maybe we need two workshops--one to

educate others, and one to give NF2 people a chance to vent? Marie

Re: ALDAcon workshops...lacking

>first of, i do not go to theseALDA things but thought id maybe lend a

thought

>or two

>

>while " whats your beef may be a good discussion I would think the purpose

of

>an NF2 workshop would be to educate those who are curious and do not have

>nf2, such as " who are those people with half smiles " (or a catchy title but

>my sense of humor is kinda absent lately)

>

>put together some literature and share with others what it has been like to

>have NF2, and not all the bad stuff thatwould make people pity us, you know

>what I mean?? Everyone thre is late deafend so you cant get up andsay, " oh

>my god its sooo hard to become deaf after so many years of hearing "

>obviously most everyone there will know the feeeling

>

>oh well i sure would be curious if any crewbie put a workshop together and

>how it turns out

>

>Caren

>

>In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

>writes:

>

><< My suggestion for the panel would be " What's your

> Beef " about NF2; panel members each say what has been hardest for them to

> deal with with NF2, and then see if anyone has any suggestions; then open

it

> up to the attendees and see what their beef is?

> Marie >>

>

>

>

>

[Guest guest]

Ken,

Those are very good ideas. I don't know if you remember, but I had met you

last year at San Diego during the Deaf Festival while you were with

Wyndtell. Anyways, an NF2 panel would be good. How about a panel topic of

" finding closure with NF2, but new problems seem to arise when you do " ?

Well, if you need any help, feel free to ask.

Mark

----Original Message Follows----

maybe a panel? How about something related to... " How is Nf-2

>related deafness unique? " or... " Who are all of these people with

half-smiles

>at ALDAcon? " Grin.

>

>Let me know if any of you are interested. I might be able to join a panel

or

>help with a workshop. I think it is important we have something for those

>attending with NF-2 AND everyone else.

>

>Thanks much,

>Ken Arcia - President

>ALDA Inc.

>

>

>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Ken,

Those are very good ideas. I don't know if you remember, but I had met you

last year at San Diego during the Deaf Festival while you were with

Wyndtell. Anyways, an NF2 panel would be good. How about a panel topic of

" finding closure with NF2, but new problems seem to arise when you do " ?

Well, if you need any help, feel free to ask.

Mark

----Original Message Follows----

maybe a panel? How about something related to... " How is Nf-2

>related deafness unique? " or... " Who are all of these people with

half-smiles

>at ALDAcon? " Grin.

>

>Let me know if any of you are interested. I might be able to join a panel

or

>help with a workshop. I think it is important we have something for those

>attending with NF-2 AND everyone else.

>

>Thanks much,

>Ken Arcia - President

>ALDA Inc.

>

>

>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Another good point for NF2 Funding Research. We could use this as an

opportunity to educate people about NF2 and hopefully get more funding for

NF2 resarch.

Mark@...

----Original Message Follows----

Well that's a good point Caren; However, maybe we need two workshops--one to

educate others, and one to give NF2 people a chance to vent? Marie

Re: ALDAcon workshops...lacking

>first of, i do not go to theseALDA things but thought id maybe lend a

thought

>or two

>

>while " whats your beef may be a good discussion I would think the purpose

of

>an NF2 workshop would be to educate those who are curious and do not have

>nf2, such as " who are those people with half smiles " (or a catchy title

but

>my sense of humor is kinda absent lately)

>

>put together some literature and share with others what it has been like

to

>have NF2, and not all the bad stuff thatwould make people pity us, you

know

>what I mean?? Everyone thre is late deafend so you cant get up andsay,

" oh

>my god its sooo hard to become deaf after so many years of hearing "

>obviously most everyone there will know the feeeling

>

>oh well i sure would be curious if any crewbie put a workshop together and

>how it turns out

>

>Caren

>

>In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

>writes:

>

><< My suggestion for the panel would be " What's your

> Beef " about NF2; panel members each say what has been hardest for them

to

> deal with with NF2, and then see if anyone has any suggestions; then open

it

> up to the attendees and see what their beef is?

> Marie >>

>

>

>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Actually most everyone atthe cons knowabout nf2, thereare so many of us its hard

to ignore.vfrom past cons, the ones attending the nf2 workshops are the ones and

family of nf2ers. It would never happen but a workshop with some real research

news, gene therapy news etc, anything to give us hope would be good. what about

a

rep from the army nf research program?? now THAT would be interesting!

LasVegasG1RL@... wrote:

> first of, i do not go to theseALDA things but thought id maybe lend a thought

> or two

>

> while " whats your beef may be a good discussion I would think the purpose of

> an NF2 workshop would be to educate those who are curious and do not have

> nf2, such as " who are those people with half smiles " (or a catchy title but

> my sense of humor is kinda absent lately)

>

> put together some literature and share with others what it has been like to

> have NF2, and not all the bad stuff thatwould make people pity us, you know

> what I mean?? Everyone thre is late deafend so you cant get up andsay, " oh

> my god its sooo hard to become deaf after so many years of hearing "

> obviously most everyone there will know the feeeling

>

> oh well i sure would be curious if any crewbie put a workshop together and

> how it turns out

>

> Caren

>

> In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

> writes:

>

> << My suggestion for the panel would be " What's your

> Beef " about NF2; panel members each say what has been hardest for them to

> deal with with NF2, and then see if anyone has any suggestions; then open it

> up to the attendees and see what their beef is?

> Marie >>

[Guest guest]

Actually most everyone atthe cons knowabout nf2, thereare so many of us its hard

to ignore.vfrom past cons, the ones attending the nf2 workshops are the ones and

family of nf2ers. It would never happen but a workshop with some real research

news, gene therapy news etc, anything to give us hope would be good. what about

a

rep from the army nf research program?? now THAT would be interesting!

LasVegasG1RL@... wrote:

> first of, i do not go to theseALDA things but thought id maybe lend a thought

> or two

>

> while " whats your beef may be a good discussion I would think the purpose of

> an NF2 workshop would be to educate those who are curious and do not have

> nf2, such as " who are those people with half smiles " (or a catchy title but

> my sense of humor is kinda absent lately)

>

> put together some literature and share with others what it has been like to

> have NF2, and not all the bad stuff thatwould make people pity us, you know

> what I mean?? Everyone thre is late deafend so you cant get up andsay, " oh

> my god its sooo hard to become deaf after so many years of hearing "

> obviously most everyone there will know the feeeling

>

> oh well i sure would be curious if any crewbie put a workshop together and

> how it turns out

>

> Caren

>

> In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

> writes:

>

> << My suggestion for the panel would be " What's your

> Beef " about NF2; panel members each say what has been hardest for them to

> deal with with NF2, and then see if anyone has any suggestions; then open it

> up to the attendees and see what their beef is?

> Marie >>

[Guest guest]

Actually most everyone atthe cons knowabout nf2, thereare so many of us its hard

to ignore.vfrom past cons, the ones attending the nf2 workshops are the ones and

family of nf2ers. It would never happen but a workshop with some real research

news, gene therapy news etc, anything to give us hope would be good. what about

a

rep from the army nf research program?? now THAT would be interesting!

LasVegasG1RL@... wrote:

> first of, i do not go to theseALDA things but thought id maybe lend a thought

> or two

>

> while " whats your beef may be a good discussion I would think the purpose of

> an NF2 workshop would be to educate those who are curious and do not have

> nf2, such as " who are those people with half smiles " (or a catchy title but

> my sense of humor is kinda absent lately)

>

> put together some literature and share with others what it has been like to

> have NF2, and not all the bad stuff thatwould make people pity us, you know

> what I mean?? Everyone thre is late deafend so you cant get up andsay, " oh

> my god its sooo hard to become deaf after so many years of hearing "

> obviously most everyone there will know the feeeling

>

> oh well i sure would be curious if any crewbie put a workshop together and

> how it turns out

>

> Caren

>

> In a message dated 8/4/00 4:58:54 PM Pacific Daylight Time, mcdrew@...

> writes:

>

> << My suggestion for the panel would be " What's your

> Beef " about NF2; panel members each say what has been hardest for them to

> deal with with NF2, and then see if anyone has any suggestions; then open it

> up to the attendees and see what their beef is?

> Marie >>

[Guest guest]

thats whats so crappy abt nf2, there is no closure, unless you count death.

sorry, but true! ken did a workshop a few years ago on grief, it was pretty

good!

Mark Sarmac wrote:

> Ken,

>

> Those are very good ideas. I don't know if you remember, but I had met you

> last year at San Diego during the Deaf Festival while you were with

> Wyndtell. Anyways, an NF2 panel would be good. How about a panel topic of

> " finding closure with NF2, but new problems seem to arise when you do " ?

>

> Well, if you need any help, feel free to ask.

>

> Mark

>

> ----Original Message Follows----

> maybe a panel? How about something related to... " How is Nf-2

> >related deafness unique? " or... " Who are all of these people with

> half-smiles

> >at ALDAcon? " Grin.

> >

> >Let me know if any of you are interested. I might be able to join a panel

> or

> >help with a workshop. I think it is important we have something for those

> >attending with NF-2 AND everyone else.

> >

> >Thanks much,

> >Ken Arcia - President

> >ALDA Inc.

> >

> >

> >

> >

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

thats whats so crappy abt nf2, there is no closure, unless you count death.

sorry, but true! ken did a workshop a few years ago on grief, it was pretty

good!

Mark Sarmac wrote:

> Ken,

>

> Those are very good ideas. I don't know if you remember, but I had met you

> last year at San Diego during the Deaf Festival while you were with

> Wyndtell. Anyways, an NF2 panel would be good. How about a panel topic of

> " finding closure with NF2, but new problems seem to arise when you do " ?

>

> Well, if you need any help, feel free to ask.

>

> Mark

>

> ----Original Message Follows----

> maybe a panel? How about something related to... " How is Nf-2

> >related deafness unique? " or... " Who are all of these people with

> half-smiles

> >at ALDAcon? " Grin.

> >

> >Let me know if any of you are interested. I might be able to join a panel

> or

> >help with a workshop. I think it is important we have something for those

> >attending with NF-2 AND everyone else.

> >

> >Thanks much,

> >Ken Arcia - President

> >ALDA Inc.

> >

> >

> >

> >

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

,

You are so right: there is no closure. Our friends are always in disbelief

that there is yet another surgery or problem. It is beyond the average

person's comprehension. Only when you live it, MUST you understand it. Vicki

[Guest guest]

----Original Message Follows----

what about a rep from the army nf research program?? now THAT would be

interesting!<---INDEED!! Or some other research facilities that are

interested.

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

----Original Message Follows----

what about a rep from the army nf research program?? now THAT would be

interesting!<---INDEED!! Or some other research facilities that are

interested.

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

----Original Message Follows----

what about a rep from the army nf research program?? now THAT would be

interesting!<---INDEED!! Or some other research facilities that are

interested.

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

----Original Message Follows----

thats whats so crappy abt nf2, there is no closure, unless you count

death.<=======YEAH! That is kinda crappy, but true ain't it? Kinda made me a

cynical and reminded me of a appropriate quote, " the longer you complain,

the longer God let's you live "

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

FRANK ! You shock me.... What do you need, a time, day and year ??

The fact that some of us don't even know we have NF until after 50 , should

make you feel better about this ...

MArcus whose facing the certainty of FRIDAY NIGHT IN OZ !!!

Re: ALDAcon workshops...lacking

>

> thats whats so crappy abt nf2, there is no closure, unless you count

death.

> sorry, but true! ken did a workshop a few years ago on grief, it was

pretty

> good!

>

>

>

>

>

>

[Guest guest]

FRANK ! You shock me.... What do you need, a time, day and year ??

The fact that some of us don't even know we have NF until after 50 , should

make you feel better about this ...

MArcus whose facing the certainty of FRIDAY NIGHT IN OZ !!!

Re: ALDAcon workshops...lacking

>

> thats whats so crappy abt nf2, there is no closure, unless you count

death.

> sorry, but true! ken did a workshop a few years ago on grief, it was

pretty

> good!

>

>

>

>

>

>

[Guest guest]

I was referring to your uncertainty ie : What happens next, and what's

your life expectancy. date time year.

What do you want to be told by the experts ?? How to die gracefully ?

Nothing to do with flies

I cant accept negativity, eats your brains out, wastes your life .

Re: ALDAcon workshops...lacking

>

> thats whats so crappy abt nf2, there is no closure, unless you count

death.

> sorry, but true! ken did a workshop a few years ago on grief, it was

pretty

> good!

>

>

>

>

>

>

[Guest guest]

Boy that's a great idea! Next year's con is in Rhode Island or somewhere

near there, so it should be doable. I am forwarding this to NF Inc. to see

if they might have any ideas or any way of helping, telling us who to

contact! Marie

Re: ALDAcon workshops...lacking

>

>

>

>----Original Message Follows----

>

>what about a rep from the army nf research program?? now THAT would be

>interesting!<---INDEED!! Or some other research facilities that are

>interested.

>

>

>

>________________________________________________________________________

>Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

>

>

>