A Question For You

[Guest guest]

Don Summers:

Just yesterday I sent the email below ***************** to Don Crouse and

there has been discussion on the list of several ideas for publicity. The

thesis of my ideas has been that publicity and awareness from a small

investment is better than any research from a small investment. Bill Werre

has suggested an ad in a neurology journal, for example. His idea

illustrates the possibilities.

It just seems a shame that people are afflected with this disease, and

there are so few medical professional aware of it!

If this avenue is explored, the support of a person who knows MSA and who

is effective at public relations would be critical.

As you can see we are in the brainstorming mode at the moment.

It seems to me there is a lot of synergy between the SDS/MSA

Support Group and this email list. How can we capitalize on it?

What are your thoughts?

******************

Let me introduce myself. I am Sennewald and up until three years ago

I lived in Fair Haven, not far from Tower Hill in Red Bank, where I believe

you used to live. Now, I learned today you are in Pompton Plains. I have

been a subscriber to the Shy-Drager/MSA email list since my wife was

diagnosed with MSA/SND last year. Originally, she was Dxed with

Parkinson's Disease while we lived in Fair Haven.

Somewhere in my Internet travels I learned of your role of Marketing

Director for the SD/MSA Web Site. Last Sunday in the chat room, I was

promoting better publicity for the email list. See separate email to list

below *********** which was titled ShyDrager List Publicity.

My question for you as marketing Director is: Do you believe there is any

merit in trying to improve the awareness of the medical community of the

email list and web site? I would appreciate your comments.

*************

Last Sunday in the chat room, I and several others including Pam Bower,

discussed the several proposals for commemorating the addition of the 500th

member to the list. I was promoting an idea for some form of publicity,

for the existence of the list, to medical professionals and to the world at

large. My thought was that if we had a donation of several dollars from

each member, it might be more effective to use that money in a public

relations effort, as opposed to, for example, giving the relatively small

amount of money to Vanderbilt for research. My basic belief is the list is

performing a valuable service for people involved with MSA that is largely

unrecognized, especially in the medical community.

Pam challenged me to come up with feasible approaches to obtain and/or to

implement a public relations program with such a relatively small resource.

While I tried several ideas in real time, I was unable to develop a good

one while in the chat room and said I would think about it and get back to

her.

I have continued to think about it and have not been able to improve on the

ideas of last Sunday. This note " gets back to Pam " and make the list aware

of the discussion. Who knows, maybe some one else out there shares the

same basic belief as myself and might have a better idea.

The challenge as I see it is:

As a way to commemorate the addition of the 500th person to the email list,

is there a way to make the medical community, and others if possible, aware

of this email list and its valuable functions for folks involved with MSA?

For example, a well written announcement on the attributes of the list

could be posted on the Internet - where? - and mass emailed to the

neurologists of the world. Who would write it? A PR person? How do we

get the email distribution list? And so on.

Sennewald