received an email from a friend whose husband has PD asking my opinion of the discussion of MJF (and the infamous campaign ad) on the Today show day before yesterday--that even Matt Lauer castigated Michael for deliberately manipulating his medications to appear dyskinetic.....anyone else see this ? madelyn

is what Matt Lauer said:

LAUER: And you brought up Michael J. Fox. Let me just ask you: You know, Rush Limbaugh started a lot of controversy when he said perhaps Michael J. Fox was exaggerating or faking these effects of Parkinson's disease in that ad promoting stem cell research. Didn't Rush Limbaugh just say what a lot of people were privately thinking?

INGRAHAM: Well, Michael J. Fox himself, I think, had written that when he testified before Congress, he decided to go off his medication. But this is not about Limbaugh, it's not about Fox. It's about an amendment that claims to ban cloning, Matt, and instead it constitutionalizes the right to clone for the destruction of those embryos that are in the lab.

LAUER: And Sue --

INGRAHAM: That's the fact. It's not about Limbaugh, and the media loves to make it about Limbaugh and Fox. That's not what it's about.

LAUER: But also, Susan, last word. If Michael Fox goes out there politically and puts himself in the fray, he has to expect to be, you know, taken to account, correct?

ESTRICH: Correct. And he is being taken to account.

None of the people interviewed are experts on anything, much less PD. And the initiative they are talking about explicitly bans cloning.

Lauer neither consulted medical experts nor even read the law.

You can take Lauer to account by calling this number: 212-664-4444. Do NOT let her send you to an answering machine

I didn't see it but I read something about it on the Internet this morning. Then I saw on a different news show that Michael should not allow himself to be manipulated by the politicians. So I fired off this email, which I'm going to just copy here as its faster:

---
The idea that MJF is being manipulated is ridiculous. The public is having great difficulty accepting what Parkinson's really looks like.

He didn't overdose his meds for the ad. Living with Parkinson's is a continuous challenge of not having too little or too much med in your system. It depends upon a variety of things - how much you ate, what you ate, how much sleep, how much stress. Over time you start losing the battle and that is where MIchael is right now.

The public is used to ignoring people like Michael.

----end of email

Well people - as the saying goes - "in your face". DBS is the only choice with the halt of GDNF. Someone needs to call Amgen and remind them that , quite possibly, relief of those torturous movements and discomfort is sitting on their shelf as they selfishly hoard it until a larger profit can be made.

Sorry I strayed a little off topic.
Paula

thank you both for your replies--am calling, emailing and writing letters to the television and radio networks, and urging everyone on my email list to do the same
the discussion that ESC should not be political --i wholeheartedly agree. alas, it has been made political, otherwise research would not currently be nonexistent in the US....

Don't forget the most important avenue for publlicity and those are the letters to the editors and feedback to reporters.

There if you can word it and get it published is the best place to put your thoughts.

People read the papers on the way to work and on the way home or later in the day and if they miss a few words as when on tv or radio all they have to do is look and reread it. It is so much easier to tell your family and your friends or co-workers when you have the printed word in front of you.

I send my letters and those of others all over the place. Some even respond lol

It will be so interesting as Mike brings these commercials out one by one, We can keep the momentum going by not talking about any individual one and staying on the subject of Parkinsons only.

That way we won't get into the fracus SCR brings about.

Anyone here want to set up a way to go about a writing campaign. Have to do it fst as the time is fleeting. Elections are very soon.

What say anyone?

my list i probably no where as extensive as yours but today i did send out ten copies of my letter to the editor today to newpapers all over the country but most of them in state and in my area where people know me. i an sad toi say that i have been getting "fan" mail back from some of those so-called Christian Catholics up at my church who have set themselves up as my judge, jury & executioner. last night, i was on our local cbs affiliate with my good friend and stem cell researcher at bradley university, dr. craig cady. we spoke a bit about the boneheaded comments by rush but mostly we talked about stem cell (all types) research and then on tues, i am scheduled to do a live 10 minute in depth interview on our local nbc affiliate. i like the newspapers better tho.don't have to spend so much time getting dressed!!