[paula_w]

The Wall Street Journal reports about a stunning admission of failure by
major drug manufacturers who market drugs for the treatment of Alzheimer's:

"Companies said they're running into a stone wall with Alzheimer's and
Parkinson's," said Ray Woosley, chief executive of the Critical Path
Institute, which oversees the coalition. "We really believe drugs are
failing because we honestly don't understand the disease


http://www.ahrp.org/cms/content/view/707/9/ ;

[madamlash]

Oh great! We knew they didn't know what they were doing and now they had to go and confirm it!

[chasmo]

it will be some one tripping over the answer, because its almost impossible to find a cure for something you do not have a clue as to the cause(s) of our "fun" diseases......

[lindylanka]

Time to start listening to the patients...

[indigogo]

This is why biomarkers studies are so important. We need to pause for the few years it will take to collect data that will, hopefully, define the disease more precisely.

[paula_w]

i also hope to be impressed with this coalition that is forming to share information. Databases and genetics will be major factors it seems in future research. But if patients are not included, it will be like all the rest.

We have to take stands on certain issues and with everyone, just about everyone, sponsored by pharmas, our own representative organizations rarely take stands on issues that patients feel should be discussed.

i can understand this [do i have a choice?] but for this very reason patients should be allowed to participate. As it is , my life decisions are being made by someone who concurently is being given hundreds of thousands of dollars toward studies or conferences that very few patients can attend. Can we trust their decisions when they don't even feel they can support us and hold us at bay? When do they talk like a patient representative? It seems like they are perpetual college students...always attending symposiums.

We are the reason these representatives have lovely top floor offices in new york city and dc, and miami, chicago, etc, and huge salaries. I know many of them and like them. But if their performance were measured on how many people were served or got better every year, they would be in trouble.

this is not to be disrespectful. but patients should be sponsored, their projects are worthwhile, a result of tremendously hard work and patients should be sponsored to be included in these decisions and symposiums. It is happening but not guaranteed and the money is there.

We are different from foundation employees. Researchers are delighted to speak immediately to the complexity of this illness and they can talk to us very spiritedly about how they feel about what they are looking for funding for. They leave with smiles and we hear from them afterwards.

Research is coming up empty for reasons that are not accounted for by statistics. It's like a recipe with an artificial main ingredient. Artficial crab meat on your dinner plate. Our perspective is decided by others who have no pd. No new perspectives means no new anything.

Carey i am all for the biomarker studies and asked if people like my daughters could participate as controls. no reply. But would you please define "pause for a couple of years?" Who do you mean should pause or was it just a figure of speech?

I'll say this much: the honesty in the above article, in spite of its failure confirmation is appreciated. i'm glad for the realism and no one believes the cure in five year rhetoric anymore. now let's use all of our resources - something's gotta change. Data sharing is a good start but what took them so long?

Amgen GDNF is coming back...it has taken 7 years and counting. So pausing a few years is ok rhetorically but many will suffer and die in that period of time, which makes me have to reply "no, we just can't."

[indigogo]

hey Paula!

When I say, "Pause for a couple of years", I mean that I really don't think that they understand the disease yet; they can't determine if something really works unless it masks symptoms - they don't know if a new treatment actually halts or stalls progression. It's kind of a shotgun approach, as well as shooting in the dark.

The various biomarkers studies that are going on will help turn on the light by discovering targets that can more precisely be hit and tracked to see if there really is any change in our biology.

The article that you posted at the beginning called the announcement "stunning" - it is to me, in that researchers are finally taking the time to say, "hey, we really don't fully understand this disease - let's put some effort into discovering more." That was fully evident at the meeting of the MJFF scientific advisory board in February - they flat out recognize, and articulated out loud, that they need to know if PD is one disease with a spectrum of symptoms or a variety of syndromes, and that this unknown affects development of new treatments as well as recruiting the right patient population into trials.

So, within this context, taking a pause, to me, means thinking first about undertaking new clinical trials for treatments until they know a bit more about what they are trying to treat.

I believe the answer is yes to your daughters' involvement in the MJFF PPMI trial - I think they can't be blood relatives to one of the enrolled patients, but can be blood relatives to someone with Parkinson's. There is a trial site in Tampa; they could sign up! (I'm not sure what the other qualifications are; might be some regarding age and gender)