[paula_w]

Where to begin? It's been a long time since I felt like I was really CHANGING ANYTHING. We stumbled into Amgen's bumbling phase II trial just at the same time as we were buildling the pipeline project to track things like that. Ended up in medical history.

Those of you who know me personally or from this forum, who know my story, also know that this wasn't the first time I happened to be in the right place at the right time. That's where i got my drive.

Well, I have that feeling again. This is going to be unique and will change the way clinical trials are conducted. And, as Rick has always said - we have to do it ourselves.

I am writing here now to ask each and everyone of you to look hard at yourself, and decide if you are up for being an online advocate. Then, can you please take an honest look at what you are good at. And make a decision about working on any of this.

I can only hope and pray that the community will share info at their comfort level in any of the databases that we come up with. I am ecstatic [when is the last time any regulars on this forum have seen my outlook as "ecstatic"?] that John will provide multiple databases.

I have emailed Todd Scherer who is Pres. of Research at FOX. I asked him and want to ask others what seems to me to be the obvious first question - what kind of information do researchers need? want? I made it clear that i was only asking for advice, not sponsorship. We are a patient group, but need collaboration with experts to succeed. I don't know if or when I will hear back from him -this question is a little bigger than the others I've asked....lol

Ok more is better in this instance. Doc J isn't available immediately but there is a monkey hanging around here who has offered some help; so I want to keep the momentum going.

forward
paula

[reverett123]

In gathering data, particularly for digital compilation, a certain amount of standardization is needed. That means we have to prepare the questionaires bjut it doesn't necessarily mean that we have to prepare the questions.

When ready, I would suggest that a lot of effort go into soliciting specific questions from all parties - patients, their caregivers, their doctors, researchers, the orgs, etc. There should be provisions for a constant stream of question-submittal with regular (annual?) issuance of supplemental questionaires.

I would also suggest that this initial call for submittal double as a PR vehicle.

There is a need for a series of levels of participation. If we end up with 400 questions, it is going to be hard to get all but the most dedicated to answer. Break it into blocks of fifty or so and urge patients to go as far as they can.

If possible, it would be good if the individual's own neuro could be persuaded to fill out an initial assessment of the patient and follow up at intervals. It would also be great if that could include things like standard blood tests and similar items already in the file.

[Curious]

Originally Posted by reverett123

In gathering data, particularly for digital compilation, a certain amount of standardization is needed. That means we have to prepare the questionaires bjut it doesn't necessarily mean that we have to prepare the questions.

When ready, I would suggest that a lot of effort go into soliciting specific questions from all parties - patients, their caregivers, their doctors, researchers, the orgs, etc. There should be provisions for a constant stream of question-submittal with regular (annual?) issuance of supplemental questionaires.

I would also suggest that this initial call for submittal double as a PR vehicle.

There is a need for a series of levels of participation. If we end up with 400 questions, it is going to be hard to get all but the most dedicated to answer. Break it into blocks of fifty or so and urge patients to go as far as they can.

If possible, it would be good if the individual's own neuro could be persuaded to fill out an initial assessment of the patient and follow up at intervals. It would also be great if that could include things like standard blood tests and similar items already in the file.

This is a great idea Rick.

If it does end up where there are 400 questions () these questions can be emailed out in blocks and the data entered.

One obstical in getting neuro' involved would be HIPPS laws. There could a be form that the people fill out themselves with getting the answers from their dr's.

Beleive it or not, I do have a lot of computer/website experience and I have also worked closely in the medical field.

[indigogo]

I'm reposting the last post on editing the Mission Statement below; I hope everyone will read and comment:

Originally Posted by aj04 (all the green)
This discussion is sounding wonderfully creative, conscientious, and just downright smart. I think individual's talents and hard-won insights born out of their experiences both within and without the PD community will continue to inform both the process and the results. That is to say, "Bravo."

But, pf course, I have some specific comments to make.

Carey wrote:
People with Parkinson’s Global Coalition for Hope

(Of course, those of you who have known me for a long time know that I have some things to say about hope--but they don't belong here. Read, or re-read, Tom's words on hope reprinted below.)


United by incurable disease, common purpose and shared humanity to speak as one voice for people living with Parkinson’s disease.

Do we have to make this claim? One voice is not necessarily entirely accurate, and to simply speak for people living with PD is enough.

The Coalition is comprised of This international coalition comprises Parkinson's patients, their families, and friends. Or, The Coalition comprises Parkinson's patients, their families, and friends around the world. Our mission is to enhance and accelerate efforts to find new treatments and a cure, and to promote best practices for quality of life. Our goal is to unify the Parkinson’s patient community through an internet database for advocacy, action and research. We claim the right and authority to represent our own interests. Our guiding principle is HOPE THROUGH ACTION. Is it only through action? Are we are talking about education and understanding too?

In order to advance our Mission and accomplish our Goals, we:

Encourage patient involvement/advocacy
Collect and disseminate information of particular importance, scientific and otherwise
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases on topics of concern to PWP

We do this through the operation of a website that collects information for several databases and acts as a platform for the promotion of patient-driven projects worldwide.

In the words of Tom I:

”Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, rather than on what you can’t.

We are right to be hopeful and we have a duty to communicate this hope to others so that they too will engage in the quest for the acceleration of the inevitable downfall of Parkinson’s.”
__________
Paula, thanks for the reminder that those who are working within the orgs' structures are still needed there. That representation has been hard won and is important. As are the efforts, old and new, taken by individuals who have seen a hole in the community and gone right ahead and filled iit.

--------------------------------------

indigogo's post in reply:
AJ - thank you for taking the time to reply.

I agree with most of your suggestions. Here's the run down for me:

- I included Hope in the title because I was trying to gather all of the proposed ideas together. I think all is on the table and up for discussion. Hope is kind of squishy. I love what Tom writes about it.

- I agree; taking out "with one voice" actually makes it stronger and more truthful; we are actually speaking for several voices

- I think re-wording the first sentence is just fine.

- Regarding "Hope through action" - I think educating people and promoting understanding IS taking action. I actually originally wrote, "Hope through action, education, and awareness," but decided Hope through Action a little pithier and really encompassed all. It's all on the table.

- I agree we need to continue the work through established channels; we have experienced tremendous respect and success. I believe the "patient only" movement exists only because there are things we cannot expect the orgs to do on our behalf. We sow only discontent if we continue to complain about things that cannot be solved within the current structure. I hope that what we are doing is a positive for the PD community as a whole, something to be embraced not feared.

That said, I had to overcome my own fears in order to completely get behind this effort. Yesterday I found this quote from Susan B Anthony (the women's rights activist who worked for U.S. women's suffrage in the latter part of the 19th century, for those abroad); it gave me strength:

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony

I don't think we are "despised and persecuted," but I do think we are often not heard.

[indigogo]

This is reposted from the first PD Community Thread
From PerryC

This very well stated Carey, eloquent and inspirational. And Tom’s statement puts the whole concept into a context with a spoonful of humanity with pinch of passion that I know I could have never understood before I had PD, but I am sure most do understand. It reminds me of a conversation I had with Tom a couple of years ago about so called "false hope" that PWP were being given by study doctors in the GDNF clinical trials. The power of hope is a prime basis for the uniqueness of the patient view

Very observent people recognize the patient perspective as a key asset at the table, necessary to solve this disease. Clifton Leaf, from Fortune Magazine, a cancer survivor himself comes to mind, when he quoted me with the bottom line on his thoughtful article on FDA, "Deadly Caution," saying the motto of the Pipeline Project, "The missing ingredient in the development of new therapies is the voice of the patient."


Legitimacy

As someone who has made great efforts to represent the interests of PWP in regulatory processes and with industry. I do not think it is possible to be the one voice for anything, because patients are people with different life situations and expectations. I present myself and the Pipeline project as an "authentic voice for patients." Through forums like this one and association with people like Paula, Peg, Carolyn, Greg, Ann, Linda, Ken, Sheryl, Jean, David E, as well as Tom and Carey, and many others who are active in leading opinion for those involved with PD advocacy, I try to stay tuned to the PD patient community opinion. I think we can safely say that we are authentic and well informed patients who take the Patient view only, whereas all the PD orgs. have other constituencies that influence them greatly. If other groups with PD presence want to challenge our legitimacy to speak for patients views, our response should be to work with them incorporate their views into our understanding of the patient perspectives, not squash them or blow them off. This way we maintain our legitimacy as a voice for the patient.

Real Influence
An example of the strength we have already gained is our relationship with the FDA staff in the Office of Special Health Initiatives (OSHI), who have the task of liaison with advocate groups. They rely on the PPP network to keep their hired PD patient advocates informed about PD science, clinical research, and the views of PWP in order to effectively represent patient interests. This provides some hope in itself, because it is the first nose looking under the tent that covers the black hole of FDA regulation of industry. My experience with more than a half dozen cases is that what goes on doesn’t always smell like roses, and that some light on the process will help control some of the problems by keeping a focus on patient concerns. This is at a critical time in the process of design of clinical trials when the patient voice can really make a difference, and already has in a number of instances. <We are fortunate to have 2 new FDA Consultants, PWP who are highly educated with scientific PhD's, former government regulators in their careers (one as an FDA reviewer), who have been active in the Pipeline Project and are working on behalf of PWP.>

Additional Goals
I would like to suggest other goals of this unified voice for patients to provide Leadership in setting the agenda for the PD community as a whole, which is appropriate give the success we have already demonstrated in the Pipeline Project and other patient motivated initiatives and advocacy efforts. We are not aiming at taking over roles being accomplished effectively by existing PD organizations, but we feel it is our mandate to identify gaps in the programs covered by the existing organizations and fill those gaps when the organizations fail to address our concerns.

The leadership of this new voice for patients is expected to establish by consensus rules

*a set of guidelines for PWP that evaluate and prioritize projects we as a group feel are worthwhile for patient volunteer effort,

* ethical standards and practical (such as reimbursement policies) criteria for consideration of PWP volunteers before they agree to work for an organization or make a financial contribution.

Also, if we do take initiative in program areas such as the PWP data base project which to my knowledge no one is doing adequately, that we expect that PD orgs respect this and support or at least not undermine our effectiveness.

These criteria will be helpful to increase trust and responsiveness of the PD organizations as well as industry and medical professionals to PWP needs.


Perry

[pegleg]

WATA - aka We Are The Answer!

I'm not seriously suggesting this acronym, but hope it did get your attention. I've been following the Part I but haven't closely scrutinized every post. Should I read every single reply? (sometimes it got really off course).

I like it that aj mentioned "hope," and I'd like to add to that comment. I flaunt that word around far too loosely. For example, I HOPE the doctor has something good to say, I HOPE we find a cure, or I HOPE we can do this project. Do you see how weak that sounds?

One of the first things I learned in my teacher training is "Expectations are followed by action" - if you expect something or somebody to fail - that's what you get. Our logo/legend in one school system I taught in was "Expect the Best." We should add to that "Accept no less!" I say all of this to relate to you that we have to be stronger than HOPE - and we have to portray that if we want everyone to jump on on the bandwagon. I love Nike's motto ' "Just do it!" Not only should we "Just do it," but we should remember that WATA (WE ARE THE ANSWER. Am I making sense?

I liek what you've started, Carey, as far as mission. But a very integral part has been omitted - Networking. That's what this group of advocates is famous (sometimes infamous) for - we get around. (Greg - you said that to me recently and it stuck.) You might say that networkingn is covered under "advocacy," but it needs a more prominent place of importance.


Here's what you started:

Encourage patient involvement/advocacy
Collect and disseminate information of particular importance, scientific and otherwise
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases on topics of concern to PWP

We do this through NETWORKING and the operation of a website that collects information for several databases and acts as a platform for the promotion of patient-driven projects worldwide.

I hope (awwkk!) I mean I know/expectyou will understand what I am saying. By dropping the "hope" word, I believe we shall conquer - i.e. we will stand apart from other advocacy groups. We will use words such as:
DEMAND - TRUST - DISAGREE - AGREE - ACCEPT - REJECT and similar jargon.

Now let's put some action (oh there's another - ACTION) to our mission and goals.

How about a title something like: People With Parkinson's ACTION Coalition?

Peg

[TommyI]

Well said Peggy. In fact well said everyone.
Far be it from me to put a dampener on the more medically orientated database - but I am of the opinion that we are trying to run before we can walk. I think it is a cracking (good) con - they are a genetic testing group who have patients at the heart of their ecept but I worry about our ability to create a statistically significant database without serious financial and human resource behind it - not to speak of expertise.
It might be worth getting in touch with a company called "23 and me" whom I have been introduced to and aree based in the US. Check out their website at 23andme.com. (can't do links yet - not old enough!) I have spoken to them and they are refreshing and pioneering in their approach.
I don't know whether they would be interested in getting involved in a patient database, but it is right up their street and I am sure I can make an introduction if one of you wants to talk to them.
Also I have access to our own Research Director - Dr Richard Wyse who has set up significant patient databases in the past and I am happy to ask him to assist in any way you wish.

As for the other database, I agree all Greg and Carey's comments on the Mission Statement except that I think that either the science database stands alone with a significant sponsor and we run the databse for all the other issues in the Mission statement as a stand alone project which will proceed at a much faster pace OR that we proceed with a non-scientific database to begin with which then may become more scientifically focussed given time. My view is that we must at all costs ensure quantity of data NOT quality in the first instance because without quantity we have very little to work with. If we ask for people's inside leg measurement from the outset I do not believe we will succeed in this venture.
Sorry - but that's my view.
Aside from this issue - I am excited about working with you all on this.

Tom

[jeanb]

https://www.23andme.com/

[leonore]

Well, it's hard to improve on all of your thoughtfulness, and I appreciate Carey's reminders that hope twinned with action provides the greatest impetus forward as we all take on this promising-no-thrilling! new venture.
Thus, I'd like to add here a personal theory about why, united and brainstorming, we Parkies generate so much power. It's a postulation based on recent neuroscience that I shot off to Carey (and alot of others) back in the early spring; one that I hope will pump this group up even more.

ok-here goes: it dawned on me one morning, wondering why many of us stay up all night devising creative strategies for promoting and accelerating our cure, (or, in some cases, working on artistic endeavors), that dopamine may be stimulated by the act of generating and then acting upon a new idea, and I wondered whether or not, if that were to be borne out as true, we Parkies might become addicted to the rush of dopamine, or whatever neurotransmitter is stimulated that may produce dopamaine, and then that secretion then produces a feedback loop that almost forces us to keep on generating new ideas.

Within hours of me waking early one morning and staggering to my laptop to write this up, I opened an e-mail to find news from Science Daily corroborating my theory, (without specifically mentioning dopamine) stating that two neuroscientists at Johns Hopkins had just discovered that the medial prefrontal cortex of the brains of jazz musicians, while improvising, lights up, which is the part of the brain connected with self-expression, while simultaneously, the dorsal lobe, which is involved with inhibition, is deactivated.

And I quote: "the dorsolateral prefrontal cortex, a broad portion of the front of the brain that extends to the sides, showed a slowdown in activity during improvisation. This area has been linked to planned actions and self-censoring, such as carefully deciding what words you might say at a job interview. Shutting down this area could lead to lowered inhibitions, Limb suggests...The researchers also saw increased activity in the medial prefrontal cortex, which sits in the center of the brain’s frontal lobe. This area has been linked with self-expression and activities that convey individuality, such as telling a story about yourself."

The implications, they concluded, are that any kind of improvising would cause this to happen. I submit that Parkies putting their brains together in a frenzied and driven effort to improve our lot, must cause a whole lot of frontal lobe fireworks!! The logical extension to that lighting up, I imagine, would be the secretion of neurotrasmitters, which I'll bet we use to keep medicating ourselves to "keep on goin' on."
At the behest of my neuroogist, who trotted me off to share my theory at a luncheon within a Sunday seminar that he was running, I proposed this idea to his friend, Dr. Felice Ghilardi, a neuroscientist who was presenting on Parkies and music, that morning. She grew quite excited, and proposed that she and I, at some point, sit down and devise a paradigm for a research experiment to test our brains while we were creating new ideas, specifically targeting dopamine production.

We exchanged e-mail addresses, I wrote it up and sent it to her, and perhaps some day we will actually hammer this out. (I won't hold my breath-these guys are over-extended beyond belief) Suffice it to say, I was beyond delighted to be validated as having a workable hypothesis, and I'm already quite sure, based on anecdotal and personal experience, that not only poetry-writing on my part, or the act of teaching kids to write poetry, (both part of my world) but also PD activism, and advocacy-brainstorming by those of us deeply motivated to get better, are very likely acts which are neurogenerative, and undoubtedly tap into new and unexpected reserves of energy that keeps us alive (and pecking away at our keyboards). And exponentially, like a group of jazz musicians, the degree of sparks flying when we operate as a group makes for some awesome riffing!!!
in good cheer, Leonore

P.S. From arrticle: One of the researchers, Limb, "... notes that this type of brain activity may also be present during other types of improvisational behavior that are integral parts of life for artists and non-artists alike. For example, he notes, people are continually improvising words in conversations and improvising solutions to problems on the spot. “Without this type of creativity, humans wouldn’t have advanced as a species. It’s an integral part of who we are,” Limb says.

He and Braun plan to use similar techniques to see whether the improvisational brain activity they identified matches that in other types of artists, such as poets or visual artists, as well as non-artists asked to improvise.

The study is published in the Feb. 27 issue of the journal Public Library of Science (PLoS) One. http://www.plosone.org/article/fetch...l.pone.0001679

This research was funded by the Division of Intramural Research, National Institute on Deafness and Other Communication Disorders, National Institutes of Health.

[indigogo]

This is really getting to be fun!

Thanks Perry, Tom, Peg, Paula, AJ, Rick, Jean, Leonore & Curious for your helpful and insightful comments!

Up front, I agree and disagree with Tom about the scientific database. I think it is imperative that we move forward without first trying to get a handle on that project - it is a huge, complicated undertaking and potentially expensive.

But it also is important to a large segment of the population, and should be encouraged to happen, and happen concurrently. I think our mission and goals will be written broadly enough to encompass this kind of database when it is ready for prime time.

I think the idea to investigate "23 and me" is a good one; they are connected to MJFF.

I believe our most urgent task is to collect and build a legitimate and authentic patient voice for advocacy and influence.

Perry - great stuff about identifying unmet needs and setting the agenda!

I really like all of the comments about hope and action and jazzy brains and influence and legitimacy and ecstacy and momentum and involvement and . . . !

This definitely is a work in progress - keep the suggestions and edits coming, and we'll keep refining. Here's a new take on the Mission (changes in purple):

People with Parkinson’s Global Action Alliance

United by incurable disease, common purpose and shared humanity to speak (one voice omitted) for people living with Parkinson’s disease.

The Alliance is comprised of Parkinson's patients, their families, and friends around the world. Our mission is to enhance and accelerate efforts to find new treatments and a cure, and to promote best practices for quality of life. Our goal is to unify the Parkinson’s patient community by building a global network for advocacy, action and awareness. We claim the right and authority to represent our own interests. Our guiding precept is HOPE + ACTION = SOLUTIONS

In order to advance our Mission and accomplish our Goals, we:

Encourage patient involvement/advocacy
Provide leadership in setting the agenda for the PD community as a whole
Provide education and understanding of Parkinson’s from the Patient Point of View
Identify gaps in the programs covered by the existing organizations
Work collaboratively with existing organizations to address unmet needs and assist and inform ongoing projects
Collect and disseminate information
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases

We do this through the operation of a website that acts as a virtual headquarters for networking and information sharing and collection, and serves as a platform for the promotion of patient-driven projects worldwide.

In the words of Tom I:

”Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, rather than on what you can’t.

We are right to be hopeful and we have a duty to communicate this hope to others so that they too will engage in the quest for the acceleration of the inevitable downfall of Parkinson’s.”