Quote:
Originally Posted by aj04
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.
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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.