Re: A Public Awareness Idea From A Physician

[Guest guest]

In a message dated 10/8/98 11:54:50 AM Pacific Daylight Time,

DebbieOney@... writes:

Debbie, you are always on the ball! What a great idea! I would help, if I am

needed.

Barbara Mathews.

<< What does everyone else think of the idea and, if people like the idea,

does

anyone know of sources of funding or be willing to work on that?

Debbie

>>

[Guest guest]

DebbieOney@... wrote:

>

> From: DebbieOney@...

>

> Hello everyone,

>

> A doctor who I've been in contact with for a while asked if CJD Voice ever

> considered developing some kind of pocket card or small pamphlet that could be

> mailed to primary care physicians or geriatricians? She said she gets them

> all the time from drug companies trying to get her to prescribe some new

> diabetic or hypertension drug...She said she thinks it would be very helpful.

> She suggested such a tool could have a short summary of the signs and symptoms

> that suggest CJD, diagnostic test options and general referral numbers for

> subspecialists. She said she felt it would be a great educational tool for

> physicians and would be happy to participate in developing it.

>

> I wrote her back telling her I thought it was a great idea but my concern was

> financing it. She said there are many community groups, clubs, organizations

> etc. that offer small grants to cover exactly this kind of thing ($500-1000).

> She added that if there is someone highly motivated in the group, information

> about these

> kind of grants can be gotten through a resource like the Foundation Center in

> New York City or via the internet. She said, however, that it takes a lot of

> hours of research. She said she will put it on the back burner and if she

> runs across

> something when doing periodic searches for grant resources for her own work

> she will get in touch. She said that if something turns up in the meantime or

> someone locates a resource and we need any help from her, she would be happy

> to help. However, she said she bets we are so well informed we would have the

> necessary information.

>

> I think it is a great idea and would suggest adding psychiatrists,

> ophthalomologists, optomotrists, and neurologists to the list of people to

> send to if we had sufficient funds.

>

> What does everyone else think of the idea and, if people like the idea, does

> anyone know of sources of funding or be willing to work on that?

>

> Debbie

>

> ------------------------------------------------------------------------

>

[Guest guest]

What would be involved in creating the phamplet - ? could we create our own

and then color copy it and fold it, etc....???? I do have some acces to some

of those things - if some one could create it I could possible do the copying

- and then maybe we could all do the folding and the distribution in out own

states??? How many are you thinking of doing - would you want to target one

state first and see what the response is????

[Guest guest]

What would be involved in creating the phamplet - ? could we create our own

and then color copy it and fold it, etc....???? I do have some acces to some

of those things - if some one could create it I could possible do the copying

- and then maybe we could all do the folding and the distribution in out own

states??? How many are you thinking of doing - would you want to target one

state first and see what the response is????

[Guest guest]

What would be involved in creating the phamplet - ? could we create our own

and then color copy it and fold it, etc....???? I do have some acces to some

of those things - if some one could create it I could possible do the copying

- and then maybe we could all do the folding and the distribution in out own

states??? How many are you thinking of doing - would you want to target one

state first and see what the response is????

[Guest guest]

I own a printing business here in NY. I've been copying and mailing the

flyers to Pat free of charge. I can sure give you a good price if you have

some more information when it is ready to go. Whoever takes charge of this

project give me a call and I'll do what I can for the group.

Carol

[Guest guest]

I own a printing business here in NY. I've been copying and mailing the

flyers to Pat free of charge. I can sure give you a good price if you have

some more information when it is ready to go. Whoever takes charge of this

project give me a call and I'll do what I can for the group.

Carol

[Guest guest]

I own a printing business here in NY. I've been copying and mailing the

flyers to Pat free of charge. I can sure give you a good price if you have

some more information when it is ready to go. Whoever takes charge of this

project give me a call and I'll do what I can for the group.

Carol

[Guest guest]

Debbie , That is such a terrific idea. As far as funding goes I will speak

with my sister whom might have some leads in that area or at least a

direction she might be able to send me on. If I get any positive info I'll

be sure to let you know. Jill

Re: A Public Awareness Idea From A Physician

>

>

>DebbieOney@... wrote:

>>

>> From: DebbieOney@...

>>

>> Hello everyone,

>>

>> A doctor who I've been in contact with for a while asked if CJD Voice

ever

>> considered developing some kind of pocket card or small pamphlet that

could be

>> mailed to primary care physicians or geriatricians? She said she gets

them

>> all the time from drug companies trying to get her to prescribe some new

>> diabetic or hypertension drug...She said she thinks it would be very

helpful.

>> She suggested such a tool could have a short summary of the signs and

symptoms

>> that suggest CJD, diagnostic test options and general referral numbers

for

>> subspecialists. She said she felt it would be a great educational tool

for

>> physicians and would be happy to participate in developing it.

>>

>> I wrote her back telling her I thought it was a great idea but my concern

was

>> financing it. She said there are many community groups, clubs,

organizations

>> etc. that offer small grants to cover exactly this kind of thing

($500-1000).

>> She added that if there is someone highly motivated in the group,

information

>> about these

>> kind of grants can be gotten through a resource like the Foundation

Center in

>> New York City or via the internet. She said, however, that it takes a

lot of

>> hours of research. She said she will put it on the back burner and if

she

>> runs across

>> something when doing periodic searches for grant resources for her own

work

>> she will get in touch. She said that if something turns up in the

meantime or

>> someone locates a resource and we need any help from her, she would be

happy

>> to help. However, she said she bets we are so well informed we would

have the

>> necessary information.

>>

>> I think it is a great idea and would suggest adding psychiatrists,

>> ophthalomologists, optomotrists, and neurologists to the list of people

to

>> send to if we had sufficient funds.

>>

>> What does everyone else think of the idea and, if people like the idea,

does

>> anyone know of sources of funding or be willing to work on that?

>>

>> Debbie

>>

>> ------------------------------------------------------------------------

>>

[Guest guest]

Debbie , That is such a terrific idea. As far as funding goes I will speak

with my sister whom might have some leads in that area or at least a

direction she might be able to send me on. If I get any positive info I'll

be sure to let you know. Jill

Re: A Public Awareness Idea From A Physician

>

>

>DebbieOney@... wrote:

>>

>> From: DebbieOney@...

>>

>> Hello everyone,

>>

>> A doctor who I've been in contact with for a while asked if CJD Voice

ever

>> considered developing some kind of pocket card or small pamphlet that

could be

>> mailed to primary care physicians or geriatricians? She said she gets

them

>> all the time from drug companies trying to get her to prescribe some new

>> diabetic or hypertension drug...She said she thinks it would be very

helpful.

>> She suggested such a tool could have a short summary of the signs and

symptoms

>> that suggest CJD, diagnostic test options and general referral numbers

for

>> subspecialists. She said she felt it would be a great educational tool

for

>> physicians and would be happy to participate in developing it.

>>

>> I wrote her back telling her I thought it was a great idea but my concern

was

>> financing it. She said there are many community groups, clubs,

organizations

>> etc. that offer small grants to cover exactly this kind of thing

($500-1000).

>> She added that if there is someone highly motivated in the group,

information

>> about these

>> kind of grants can be gotten through a resource like the Foundation

Center in

>> New York City or via the internet. She said, however, that it takes a

lot of

>> hours of research. She said she will put it on the back burner and if

she

>> runs across

>> something when doing periodic searches for grant resources for her own

work

>> she will get in touch. She said that if something turns up in the

meantime or

>> someone locates a resource and we need any help from her, she would be

happy

>> to help. However, she said she bets we are so well informed we would

have the

>> necessary information.

>>

>> I think it is a great idea and would suggest adding psychiatrists,

>> ophthalomologists, optomotrists, and neurologists to the list of people

to

>> send to if we had sufficient funds.

>>

>> What does everyone else think of the idea and, if people like the idea,

does

>> anyone know of sources of funding or be willing to work on that?

>>

>> Debbie

>>

>> ------------------------------------------------------------------------

>>

[Guest guest]

Debbie , That is such a terrific idea. As far as funding goes I will speak

with my sister whom might have some leads in that area or at least a

direction she might be able to send me on. If I get any positive info I'll

be sure to let you know. Jill

Re: A Public Awareness Idea From A Physician

>

>

>DebbieOney@... wrote:

>>

>> From: DebbieOney@...

>>

>> Hello everyone,

>>

>> A doctor who I've been in contact with for a while asked if CJD Voice

ever

>> considered developing some kind of pocket card or small pamphlet that

could be

>> mailed to primary care physicians or geriatricians? She said she gets

them

>> all the time from drug companies trying to get her to prescribe some new

>> diabetic or hypertension drug...She said she thinks it would be very

helpful.

>> She suggested such a tool could have a short summary of the signs and

symptoms

>> that suggest CJD, diagnostic test options and general referral numbers

for

>> subspecialists. She said she felt it would be a great educational tool

for

>> physicians and would be happy to participate in developing it.

>>

>> I wrote her back telling her I thought it was a great idea but my concern

was

>> financing it. She said there are many community groups, clubs,

organizations

>> etc. that offer small grants to cover exactly this kind of thing

($500-1000).

>> She added that if there is someone highly motivated in the group,

information

>> about these

>> kind of grants can be gotten through a resource like the Foundation

Center in

>> New York City or via the internet. She said, however, that it takes a

lot of

>> hours of research. She said she will put it on the back burner and if

she

>> runs across

>> something when doing periodic searches for grant resources for her own

work

>> she will get in touch. She said that if something turns up in the

meantime or

>> someone locates a resource and we need any help from her, she would be

happy

>> to help. However, she said she bets we are so well informed we would

have the

>> necessary information.

>>

>> I think it is a great idea and would suggest adding psychiatrists,

>> ophthalomologists, optomotrists, and neurologists to the list of people

to

>> send to if we had sufficient funds.

>>

>> What does everyone else think of the idea and, if people like the idea,

does

>> anyone know of sources of funding or be willing to work on that?

>>

>> Debbie

>>

>> ------------------------------------------------------------------------

>>

[Guest guest]

To everyone who reads and contributes to this cause -

It is so very heartening to read of the wonderful people involved here. A

small idea suddenly has a life of its own and is off and running. I think

it would be a great idea to see if contacts and their fellow members in

each state make some public announcement about these pamphlets being

distributed, maybe even distributing some by hand to local hospitals, etc.

Just a suggestion.

Keep up the great and wonderful work, everyone!!!

Shar