Physician Awareness of CMT

[Guest guest]

Hi ,

Yes this is needed. One thought I had is to have a well respected CMT doctor

write Letters to the Editors of Archives of Internal Medicine and Journal of

American Medicine explaining CMT and give a research update. Then have all of

the CMT physicians sign off on it. This could only be effective if it was

managed by an organization like CMTA, because of their extensive medical base.

But I would like to see people with CMT directly involved in writing the draft,

revisions, and final copy.

Second thought I have comes from a pre-publication book I just read. I looked

at the 6 figure marketing plan and sort of adapted it for Physician Awareness of

CMT:

1) National Print Advertising Campaign (USA Today and others)

2) National Radio Advertising Campaign 30 second spots over 1,500 radio spots

across the country

3) 18 city National Radio Statellite program

4) Aggressive online Marketing to physician websites, hospitals etc.

5) Intensive Internet Ad Campaign over a 2 week period reaching 3 million people

6) On line marketing: Health websites, others.com

7) CMT physicians Interviews and Podcasts: MSN, , You Tube, Google and

other sites.

There are a few other ideas also, but for now, until that 6 figure plan is

priortized, it's going to be up to us to educate our own Physicians. I would

really like to see funding going to a great awareness campaign like this in

addition to all the research funding that goes on.

In my experience with fundraising, awareness of the issue * always * preceeded

substantial donations. The more * awareness * the more knowledge, donations and

support.

Aren't you sorry you asked for " thoughts " ? lol

Gretchen

[Guest guest]

Hi Gretchen,

 

It sounds like a great plan!

 

Maybe fatigue could be added to the list of things to present, along with pain,

which so many doctors also don't believe CMT causes, and the wide variation in

types & severity of symptoms as well as the age they manifest.

 

I was just diagnosed with Fibromyalgia, because, in my opinion, the doctors

don't understand what CMT is capable of doing.  If 'extra' diagnoses are added

to CMT cases all the time, due to misinformation, then the true CMT disease will

never be understood.

 

BTW...I hope you are doing ok with the fire out there in SB.

 

From: gfijig <gfijig@...>

Subject: Physician Awareness of CMT

Date: Tuesday, May 5, 2009, 10:49 AM

Hi ,

Yes this is needed. One thought I had is to have a well respected CMT doctor

write Letters to the Editors of Archives of Internal Medicine and Journal of

American Medicine explaining CMT and give a research update. Then have all of

the CMT physicians sign off on it. This could only be effective if it was

managed by an organization like CMTA, because of their extensive medical base.

But I would like to see people with CMT directly involved in writing the draft,

revisions, and final copy.

Second thought I have comes from a pre-publication book I just read. I looked at

the 6 figure marketing plan and sort of adapted it for Physician Awareness of

CMT:

1) National Print Advertising Campaign (USA Today and others)

2) National Radio Advertising Campaign 30 second spots over 1,500 radio spots

across the country

3) 18 city National Radio Statellite program

4) Aggressive online Marketing to physician websites, hospitals etc.

5) Intensive Internet Ad Campaign over a 2 week period reaching 3 million people

6) On line marketing: Health websites, others.com

7) CMT physicians Interviews and Podcasts: MSN, , You Tube, Google and

other sites.

There are a few other ideas also, but for now, until that 6 figure plan is

priortized, it's going to be up to us to educate our own Physicians. I would

really like to see funding going to a great awareness campaign like this in

addition to all the research funding that goes on.

In my experience with fundraising, awareness of the issue * always * preceeded

substantial donations. The more * awareness * the more knowledge, donations and

support.

Aren't you sorry you asked for " thoughts " ? lol

Gretchen