Jean - I thought you were on the PPMI committee? That qualifies as being an MJFF adviser.

out the door more later. they weren't meant to be harsh. but we are watching money flow and never seem to get anywhere.

I really appreciate any info you share about what is going on with MJFF. I think most of would like to be 'insiders' like you but that isn't possible. So thanks again for all that you do and for representing pwp.

Jean

robin elliot taught me that word when he called linda h and me GDnF schills. we had to look it up. but we all laughed about it so i wasn't trying to be hurtful, and 'm not certain we don't all become schillls about something;it's hard to be involved with FOX but carey are you there for us too?
I have no part in any of it and have asked you publicly to be rep there and to post about it. i don't want t0 silence you - rather the opposite -but there is not much coming.
is it wrong to want some accountability just because it's the right thing to do- not because you owe me anything. the patient advisory councils are important and we fought for them. we never hear from them.

just how bad is it to be called a schill? is it untrue? sorry if it is but posters here want to talk science behind the clnical trials, and understand the reason something is selected for funding; this is a decade and more old forum. we know quite a bit but still can't get a question on pdonlineresearch. from where we are sitting an mjf cheer can rub you the wrong way.

hope that explained my comment.

adding food for thought. to be on the patient advisory council for mjff is prestigious in the less advanced pwp community; shouldn't it carry some communication with that community?

Several things:

The word is "shill," and it implies deceit, and is not flattering, and to me, offensive. Here are some definitions:

From Wikipedia:
A shill or plant is a person who helps another person or organization to sell goods or services without disclosing that he or she has a close relationship with the seller. The shill pretends to have no association with the seller/group and gives onlookers the impression that he or she is an enthusiastic independent customer

From Dictionary.com:
a person who publicizes or praises something or someone for reasons of self-interest, personal profit, or friendship or loyalty.

From the Urban Dictionary:
A person engaged in covert advertising. The shill attempts to spread buzz by personally endorsing the product in public forums with the pretense of sincerity, when in fact he is being paid for his services. "Who are you shilling for?"

From the Free Dictionary:
One who poses as a satisfied customer or an enthusiastic gambler to dupe bystanders into participating in a swindle.

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I think I am pretty clear that I am of an independent mind - but very much sold on the way MJFF conducts its business. As a PWP, I am satisfied that what they are doing is in my best interest. I am very definitely a cheerleader because I like how they operate - we should all be very happy that we have a powerhouse like Fox in our corner, and I am not going to play coy that I don't totally appreciate their efforts.

MJFF doesn't have the answers - yet. But, I am convinced, they are asking the right questions to the right people. There is virtually no question that I have asked a staff member or researcher that they haven't answered, "We are aware of that," and then follow, truthfully with either "we think there could be validity, so we are .....," or, "we don't believe that is a valid path to follow..." The are looking under every rock.

The patient council is meeting in New York in March at the same time as the MJFF Scientific Advisory Board. We have time now to put together questions that people here would like answered. So, let's do it.

Lastly, I'm not sure what you mean by this:
"adding food for thought. to be on the patient advisory council for mjff is prestigious in the less advanced pwp community; shouldn't it carry some communication with that community?"

Who asked you to pretend you don't admire them? i do apologize for the schill comment but you are asking us to put complete faith in something that has pretty much shut us out for a long time. I don't think robin meant it that way either.

advanced pwp don't care where it comes from they just want to see something. but i can't speak for them all.

and i'm talking about just being among a group and sharing, not waving their flag.

I think what is missing, and MJFF is way more evolved than any other PD entity out there, is that direct connection to the patient. I almost think that salaried positions could be created called Patient Liaisons or something. It would be a PR/Outreach kind of thing. I just think with the excruciatingly slow pace of research that we need something concrete...to know that there are professionals out here in the trenches who also head report back to Command Central. It's no longer enough to have Debi Brooks keeping in sync or with you Carey sharing with us what you learn. I think Paula has nominated you for such a position.

I think if you try to see it from the outside looking in....think that Paula is just expressing the frustration we all feel. We want to know how long are they going to perseverate over genetics before they start testing younger people for mutations at onset? Why to this date, besides strong ties being present, hasn't anyone established or abolished the idea that for some, PD is an auto immune response gone awry with a very common virus. They can't even test us for anti basal ganglia anti bodies? Because it is MJF perhaps we expect too much?

I thank my lucky stars we have MJFF; don't get me wrong. However, my source of frustration comes from the fact that they do "get it", and then nothing seems to change. So I guess I know they have our backs, but we know that we need to be directly involved to see anything really fundamentally change. I know change takes some time, but we measure that differently from most. We are here wanting to talk, tell our histories, help crack the code...but we are muted. Told we are in essence marginal. It has been said many times, no curative will be discovered without a direct line to patients; we hold the secrets. The researchers can moan and groan all they want about how unreliable and subjective we all are, but until they start making real world connections, we're not going anywhere any time soon.

In essence, it is good to hear MJFF is so in tune with us, would be better if they led by example and in a bold move started adding a direct line to patients in form of patient advocates who then had relationships with FDA, AAN, etc.

My 2 cents

LauraG

No one asked me to pretend; but I do feel it necessary to be honest. I am not objective; I am a woman living with Parkinson's who wants answers because the f****ing disease has f****ed up my life. I serve on two advisory councils; I can compare how they work. Both have talented people who want to do good things and care about us. But only one "gets us," asks the right questions, is motivated by urgency, looks at things with fresh eyes, and is not bound and weighted by 50 years of history - and that is the Fox Foundation. They have the power and imagination to get things done. They deserve our praise and support. I wave their flag because I am not simply a reporter sharing information - I am an informed patient who wants results, and, in my opinion, Fox is doing the best job for us, and there's no reason to pretend otherwise.

MJFF does have direct connections with many, many patients - and they read here. They do have relationships to patients who have relationships with the FDA, AAN, big pharma, etc. - some of them serve on the patient council. Just because you don't see it doesn't mean it doesn't exist. At some point, you do have to have a certain amount of faith - in yourself, especially. Just the fact that you know your words written here have meaning is huge - we've been posting here for more than a decade without an inkling that anyone of importance was paying attention. Now we know they do.

If you have specific questions, like the above, I would be happy to try to get answers.

Next month marks 10 years for me - and the changes and access I've seen are remarkable. I agree that there is a lot going on that we don't see - and not only with the orgs. There are countless pd advocates volunteering and working in the communities to little or no fanfare. I applaud them all.

Jean