I will repeat a suggestion which I made earlier. Prepare a set of a half-dozen four-page informational "newsletters" spelling out all the things we wish that our doctors were aware of. Post them where patients can access them, make copies, and send them to their own doctors and others as they see fit. Anonymously or not.

Each one of these "What Your Patients Wish That You Knew" would feature a URL where a doctor could get the whole set so that if issue number 5 broke through to his consciousness after the first four had been thrown away he could catch up.

This has the advantages of being cheap, effective if done properly, and within the capabilities of each of us. Think of it as a rolling manifesto available to each patient as it dawns on her that the existing situation is intolerable. A busy neuro's office could find itself getting one of these distinctive, eye-catching broadsides every week as his patients hammered at the wall around him. Sooner or later, he would notice.

Even the house bound could take a central role in printing and posting to the docs, promoting the effort to other PWPs, etc. Once it was up and going, it could attract some media attention since it is a new approach to advocacy, as well.

It would need:

• Definition of the issues and the order in which they would be raised.
• Content addressing those issues.
• Eye-catching design, preferably in black and white.
• A website explaining the effort and serving as a place to get the PDFs.
• A top-level group of patients promoting the effort to the national/international media.

Just an idea.

Jaye,

You make excellent points. I applaud MJFOX for doing the right thing and for being an excellent example of how to operate and how to work with patients.

I was at that PAN forum when the org leaders took our questions. I don't want to go through that again. They already know how we feel about duplication of efforts and administrative costs. What a waste of time it would be to repeat that drill.

Oh well, I still wish things would change, no matter how unlikely.

Jean

Rick - what you suggest would definitely get their attention. But as Jaye so eloquently pointed out: " My mailbox is crammed with expensive four-color "newsletters" that contain pictures of the donors (whose motives are laudable) attending gala balls and sitting next to lovely floral arrangements. "

How about taking public information (found in annual reports) and showing comparisons. For example this is what a listing would consist of:

Gala floral arrangements - $3,000
donated by XYZ Florist
(and they often are donated for advertising, but t hen they expect your business next time)*

* - this is called an in-kind contribution - I think lol

compared to this:

Gala floral arrangements - $-0-
donated by Austin, TX Support Group

Speaker's travel expenses and fees - $25,000*
* and this would be a "cheap" speaker!

compared to this:

Speaker's travel expenses and fees: Panel of 4 patients discussing stem cell research - $3,000 (no speakers fee - donated time)

This is just an example of showing how patient input could be so helpful. (and patient speakers are usually much more interesting)

I would hesitate to show comparison of singled out CEO salaries, but there is nothing wrong with showing how much ALL administrative staff costs (say of the three main PD orgs) as compared to a single consolidated org
(calling all PWP accountants!)

Things floating around like this, I believe, would be a tremendous eyeopener.

And it isn't fair to just compare costs - look at what orgs like the Americian Heart Association or t he Cancer Society are accomplishing! Compare their educational materials, programs they offer, etc.

Heck, you don't even have to get radical or rebellious to be like Sgt. Friday of Dragnet (showing my age) and say, "Just the facts, Ma'am - just the facts."

Jaye, most of us remember how close NPF and PDF came to a union before the deal collapsed at the last minute. No executives wanted to lose their jobs, reduce their 6-figure salaries, or relinquish their power and status. This will never change by itself; the impetus must come from those of us who have been touched by PD in one way or another. Realistically, we have to create a scenario in which everyone wins. Think about the proposals being made here and let's work towards those that are win-win-win.

Launching a negative campaign will drive potential donors away, and the orgs count on us knowing this and backing down. We can't afford to avoid fighting this battle... we just have to be smarter about finding the right carrot.

HAPPY THANKSGVING
SHERYL