[jeanb]

As discouraging as the recent news about Spheramine is, I remain dedicated to speaking about, promoting, an d participating in clinical trials. It is the only means we have to get better treatments. Thank you to the people who have participated in clinical trial(s). You are part of the solution. And yes there are flaws, and that is why I am on the working committee to write the Declaration... and why I work hard on grassroots efforts to spread awareness about the need for change.

To all the folks who have been trial participants, you can send me a photo and I"ll change it to a BW sketch & post it on www.showusthecure.com/shared_stories.htm and if you want to post a sentence or two about yourself, even better!! Sketches and stories by some of who visit this board are posted there... )

To the 99% of PWP who choose not participate in clinical trials, I hope you will keep an open mind about it. Remember what we do today affects PWP in 5-10-15-20 years. The meds we take today ALL come to us thanks to the clinical trial participants of the past.

Jean B

www.showusthecure.com/shared_stories.htm

[Stitcher]

Ditto

Ditto

Ditto

[jeanb]

This thread is troubling. The complacency of people who do not participate amazes me.

So few people participate in clinical trials - fewer than 1% of PWP! And remember that no new treatment or even a possible cure will be available until/unless it goes through clinical trials.

Remember -it is not only we are who are affected, it may eventually be our children and grandchildren who have PD. I hope by my participation to spare them this disease.

[pegleg]

I simply forgot to do this, Jean. I'll get right on it.

And people can be complacent if they don't want to see a cure, which doesn't include me!

Just a little statistical lesson:

PD is an age-related illness - there are 80 million (not a typo!) of us babyboomers hitting the age 60 mark within the next few years. What is the average age of onset for PD? Yep - age 60. Medicare won't be able to handle us all at once - and no meds means no movement - no swallowing - no walking without wheelchairs or walkers, and . . . do you get the picture?

We need a cure! We at least need better treatments, so if you don't feel an obligation after reading this, then I'm either not very convinccing or you are apathetic. (wow! I got nasty on this one!)

But you are very much needed for trials - go find one that suits you - PLEASE!
Peg

[jeanb]

And best wishes to all who are attending PDF's "Academy" this coming weekend!

[burckle]

Hi:

I'm on three trials. Tomorrow I will travel to New York for my once every three months evaluation. Every two years I go to Yale Hospital for a brain scan. I've also submitted the paper work to have my brain removed (upon my death) for PD study. If anyone can suggest other trials I'll gladly sign up (that is if they don't conflict with my ongoing trials and if they are supervised ny bona fide scientist)s.

All the best,,

Lloyd

[pegleg]

You sound like you want it as bad as I do!

Thanks

Peg