Re: Re: re/drs, nurses medically uninformed

[Guest guest]

Hey Chip (and group),

Another topic of serious merit you bring up Chip. I knew you wouldn't let

me and other's down. :0) Here's a suggestion on how to get the medical

community involved regarding the learning and possible teaching and

dissections of Chiari.

How about coming up with some kind of form letter and attaching the WACMA

website to it and sending it to the Deans' or the Head of various Medical

Schools across the US for starters? Sort of an introduction piece and

alerting them to the seriousness of Chiari and alerting them of the new

technologies involved. Perhaps, if we ask them to take it upon themselves to

start teaching about Chiari, that's our way of making a contribution.

How do we get the names of these people? Not sure, perhaps there is a

directory of some sorts out there. Since you are in charge/founder/etc. of

our group, perhaps someone can donate one to you as head of our group.

If you would like to make a project out of this by for instance, having each

of us receive the final product from you (if you are willing and/or

interested in working on this with the help of us if you'd like that), and

having us each email all of our local learning institutions and affiliated

hospitals and medical institutions. Perhaps, the local recognition plus the

fact that we can say we are directly afflicted with this (in our community)

may bring more of a focus upon them to incorporate this into their ciriculums

the following semester.

I don't mean to sound like I'm putting all of this upon you to do, but as a

leader, perhaps this is something you can look into and ask us to assist on

if needed. I'd be willing to email others if I had a directory to utilize.

If one learning institute incorporates the current issues of Chiari in each

state, that's an additional 50 states that will spread the word out on our

malformations.

Perhaps another way to get the word out is to send a sample writing of Chairi

and how it affects each of us (in general or specific ways) to each of our

local newspapers. Perhaps, these can be published in the

Medical/Health/Editorial Opinions (i.e. Ed Op) pages of various newspapers.

In such case, various members of the medical community such as neurologists

and their assistants may read this and become more interested in our plights.

If our website is enclosed, perhaps they will take the honus upon themselves

to learn more about Chairi and not just say I don't know what you are

suffering from (nah - you know doctors will rarely admit that - lol) or lets

take these tests or perhaps treat us like we are nut cases and put us on

anti-depressants to surpress our " mental " pains.

When working, I am involved with Marketing and Sales. I'm not sure how

something like this would work out, but I'm interested in hearing your

opinions on this as well as the rest of the group.

I've read SO MANY OPINIONS about the Montel and Oprah shows in the recent

past and current days as well. Maybe, if we try and reach out to different

communities like you suggested Chip, such as medical institutions (hospitals

and universities), national and local newspapers and health periodicals as

well, perhaps we won't be just talking about Montel and Oprah, but in

addition to them, perhaps we'll be able to connect with the NYTimes,

Hopkins University Hospital, The Mayo Clinic as well as the Ma & Pa's across

america where many Chiari patients in the US live and can't always make it

out to the more popular places of choice. In due time, maybe some of these

smaller places will take it upon themselves to become more aware of Chiari

and then when us or our children are afflicted by this (God forbid), at least

we will have a safe haven close by.

Maybe it's a dream, but like you mentioned in the last email, if any

suggestions, you're open to them.

Thanks for the listening ear - and thank you Tony Robbins for making dreams

come true - now only if I read the book that's sitting in my living room for

over a year already; then maybe I can become real motivated. LOL

Happy New Year in advance to you and the group,

-

ACM Type I

NNJ

[Guest guest]

> Perhaps another way to get the word out is to send a sample writing of

Chairi

> and how it affects each of us (in general or specific ways) to each of our

> local newspapers. Perhaps, these can be published in the

> Medical/Health/Editorial Opinions (i.e. Ed Op) pages of various

newspapers.

I just wanted to throw my two cents in here....not to be a downer or

anything, but when we first moved to Kansas City, I contacted the Secretary

of ASAP (who happens to live not far from me), and he said that he had been

interviewed by a newspaper here. He gave me the reporter's number, and I

called him to see if he would interview and I so that he would have a

" more rounded " story (including a child's point of view rather than just an

adult's). The reporter never even called me back, even though I left

several messages on his voice mail. Unfortunately, I was busy getting

settled here, getting the kids in school, and learning my new job, so I

didn't follow up very well, and now I've lost the reporter's name. I never

saw the writeup in the newspaper (not to say that it wasn't published - I

just didn't see it).

Just wanted to let you know that it may take persistence and perseverance to

get the newspapers to listen to us. I'm willing to give it another shot,

though!

[Guest guest]

Hello to All,

Another suggestion ---- I'm planning on getting my part of this plan going

strong in 2002 (I took on a little too much, and nothing got handled properly)

All of the medical facilities (to my knowledge) have community programs /

fairs for health. These would be a really good place to set up a table, and

spread the news and information on our conditions.

If you contact ASAP, they will send you brochures to distribute. And with a

little imagination, you can set up a fairly interesting set-up.

You may not draw as much attention as you would like, but if you get

through to 2 or 3 people each time you set up, the word will spread. There

are also many medical professionals that attend these fairs as well ---

it's really quite surprising how interested they get when they're " off duty " .

Just a suggestion.

Rainbows to you all,

Grammy

At 03:05 AM 12/30/2001 -0500, you wrote:

>Hey Chip (and group),

>

>Another topic of serious merit you bring up Chip. I knew you wouldn't let

>me and other's down. :0) Here's a suggestion on how to get the medical

>community involved regarding the learning and possible teaching and

>dissections of Chiari.

>

>How about coming up with some kind of form letter and attaching the WACMA

>website to it and sending it to the Deans' or the Head of various Medical

>Schools across the US for starters? Sort of an introduction piece and

>alerting them to the seriousness of Chiari and alerting them of the new

>technologies involved. Perhaps, if we ask them to take it upon themselves to

>start teaching about Chiari, that's our way of making a contribution.

>

>How do we get the names of these people? Not sure, perhaps there is a

>directory of some sorts out there. Since you are in charge/founder/etc. of

>our group, perhaps someone can donate one to you as head of our group.

>

>If you would like to make a project out of this by for instance, having each

>of us receive the final product from you (if you are willing and/or

>interested in working on this with the help of us if you'd like that), and

>having us each email all of our local learning institutions and affiliated

>hospitals and medical institutions. Perhaps, the local recognition plus the

>fact that we can say we are directly afflicted with this (in our community)

>may bring more of a focus upon them to incorporate this into their ciriculums

>the following semester.

>

>I don't mean to sound like I'm putting all of this upon you to do, but as a

>leader, perhaps this is something you can look into and ask us to assist on

>if needed. I'd be willing to email others if I had a directory to utilize.

>If one learning institute incorporates the current issues of Chiari in each

>state, that's an additional 50 states that will spread the word out on our

>malformations.

>

>Perhaps another way to get the word out is to send a sample writing of Chairi

>and how it affects each of us (in general or specific ways) to each of our

>local newspapers. Perhaps, these can be published in the

>Medical/Health/Editorial Opinions (i.e. Ed Op) pages of various newspapers.

>In such case, various members of the medical community such as neurologists

>and their assistants may read this and become more interested in our plights.

> If our website is enclosed, perhaps they will take the honus upon

> themselves

>to learn more about Chairi and not just say I don't know what you are

>suffering from (nah - you know doctors will rarely admit that - lol) or lets

>take these tests or perhaps treat us like we are nut cases and put us on

>anti-depressants to surpress our " mental " pains.

>

>When working, I am involved with Marketing and Sales. I'm not sure how

>something like this would work out, but I'm interested in hearing your

>opinions on this as well as the rest of the group.

>

>I've read SO MANY OPINIONS about the Montel and Oprah shows in the recent

>past and current days as well. Maybe, if we try and reach out to different

>communities like you suggested Chip, such as medical institutions (hospitals

>and universities), national and local newspapers and health periodicals as

>well, perhaps we won't be just talking about Montel and Oprah, but in

>addition to them, perhaps we'll be able to connect with the NYTimes,

>Hopkins University Hospital, The Mayo Clinic as well as the Ma & Pa's across

>america where many Chiari patients in the US live and can't always make it

>out to the more popular places of choice. In due time, maybe some of these

>smaller places will take it upon themselves to become more aware of Chiari

>and then when us or our children are afflicted by this (God forbid), at least

>we will have a safe haven close by.

>

>Maybe it's a dream, but like you mentioned in the last email, if any

>suggestions, you're open to them.

>

>Thanks for the listening ear - and thank you Tony Robbins for making dreams

>come true - now only if I read the book that's sitting in my living room for

>over a year already; then maybe I can become real motivated. LOL

>

>Happy New Year in advance to you and the group,

>-

>ACM Type I

>NNJ

>

>

>