[Debi Brooks]

I wanted to be sure you all were aware that the recently published 2009 MJFF annual report Progress is available on line. http://michaeljfox.org/docs/2009_Annual_Report.pdf

Debi

[vlhperry]

Originally Posted by Debi Brooks

I wanted to be sure you all were aware that the recently published 2009 MJFF annual report Progress is available on line. http://michaeljfox.org/docs/2009_Annual_Report.pdf

Debi

I had no idea how hard and innovative the MJFF has worked on our behalf. A simple thank you seems insufficient to express the appreciation I feel. I particularly love the encouragement of data sharing which has been a particular concern of mine. I have participated in several genetic research programs and consider it an honor to do so.

[paula_w]

that's a wonderful resource in itself, you read it and you are going to learn something. thank you for pointing us to it debi we might have missed something and spent 6 months trying to find the information.

we need to feature links here somewhere up top to your database, site,online research reports, etc. something with a graphic perhaps that could be posted on all sites, like the old mgh webring. we'd be happy to feature it on the pcc site and i'm sure everyone else would too. just an impulsive idea. but google has spoiled us all. we don't check everything and chances are i would not have seen this annual report which is an outstandingly comprehensive report.

i'm not quite finished reading it but the more we learn the more we can interact and ideas will be multiplied.

yes it's ramble time. teeth clenched mouth frozen, dinner uneaten and thoughts pouring out. It's just another day on sinemet - generic that is.

[lindylanka]

Just bumping this up to the top as it should have got more attention than it did.

Thanks for posting this Debi, as Paula said it is a valuable resource.

[Bob Dawson]

Originally Posted by lindylanka

Thanks for posting this Debi, as Paula said it is a valuable resource.

Certainly feels like a safe harbour, after surviving the nightmare storms of Pharma misconduct.
Parkies need to infiltrate and co-opt the Normals where ever it appears there is a tendency to tell the truth and get on with figuring out what to do about this disease. When you hear honest and open voices, then the tragedies that often naturally happen when the human race explores new possibilities are tolerable; everything in history and evolution involves struggle. We are not afraid of pain. We are afraid of evil conduct by the wrong people for the wrong reasons producing the wrong results and staining the history of our generation here on earth.
Here and there, we hear messages that resonate; that bring hope and fierce determination, instead of black despair and a desire to give up on the whole process.
We have to spend time and energy defending ourselves: Amgen volunteers; planned shortage of sinemet; African children being murdered for our convenience, a scandal a week in the health biz...
We are on the defensive all the time. Hopefully, there can soon be more unity of purpose and spirit; and this report from the Fox org. certainly sounds a lot better in tone and in conduct than the contempt that greets us when we knock at the doors of those who see the human race only in terms of how they can be blindsided for profit.
One road leads to freedom
One road leads to shame....

[paula_w]

Will the treated participants be taking Amantadine for the first time? The answer may be obvious but I don't take anything for granted and sorry if it was stated and i missed it.

thanks, p
p15

The experimental design involves amantadine, a current, albeit
inadequate, drug frequently used off-label to treat dyskinesia.
Patients will be treated with amantadine or placebo, and then have
their dyskinesia rated over the course of several weeks using
numerous dyskinesia measurement scales. (The researchers will
examine the response to placebo as well, in order to favor scales that
maximally separate placebo-associated changes from amantadine associated
changes.) The results will establish a path for clinical
testing of future promising novel dyskinesia treatments, increasing
the likelihood of industry investment in future clinical trials.

[Debi Brooks]

The inclusion/exclusion criteria specifies that anyone included in the study should not have been treated with amantadine for at least 3 months. If they have received amantadine in the past, then they will not be allowed in the study if they were taken off amantadine because of an adverse event.

Hope that clarifies...

Debi

[paula_w]

Originally Posted by Debi Brooks

The inclusion/exclusion criteria specifies that anyone included in the study should not have been treated with amantadine for at least 3 months. If they have received amantadine in the past, then they will not be allowed in the study if they were taken off amantadine because of an adverse event.

Hope that clarifies...

Debi

Thanks i have since discovered the webinar on pdonlineresearch and read that. I guess dyskinesia is fairly cut and dry but i wondered about people who have been on it being the same as someone who hasn't . i can quiet my dyskinesia by lying very still on my back watching a movie.

But I do take amantadine or I'd be worse. I just wonder about people who have been on it and know exactly what to expect, as well as alternatives, like being still and quiet would be as valid a measurement as someone who is quite dyskinetic and hasn't taken it yet. Come to think of it linda h hasn'ttaken it and is quite dyskinetic. i have to check the criteria again. is she too far along? i'll check. thanks debi.

Wow! I took a look an the Annual Report and am in awe of everything the Michael J. Fox Foundation does in trying to help people with PD. I've lived with Parkinson's for 8 yrs and I am 42 yrs old. For the first several yrs, I didn't really want to be educated about the disease and it's treatments. Now that it has progressed, I have learned more than I want to know about the disease, but not enough about what is being done to cure it or lesson the symptoms.

Thank you and all the people at the Michael J. Fox Foundation for your hard work, time given, and passion to help people with PD. I'm only sorry it has taken me this long to show an interest in the foundation. Keep up the good fight (work)!

Tonya (from Texas)

[Debi Brooks]

Tonya and others...

Although not everyone at MJFF spends time on Neurotalk, we all value the feedback and ideas generated here. The team works very hard and is obsessed with creating impact with patients in mind. Admittedly it isn't always so clear to folks what we do and/or how we do it but I'm pleased to see that something like the annual report really does, in some way, convey our dedication and leadership in doing what it takes to develop new treatments.

One additional way to stay connected to the research being funding is to sign up for fox flash (our e-letter) or visit our web site periodically. Also, while we don't get to every city around the country, we do host research roundtables--basically information forums open to the public (you can get that info on our site as well)...this can be another great way to be connected to science as it is developing.

Debi