FAQ/Help |
Calendar |
Search |
Today's Posts |
06-20-2009, 08:23 PM | #21 | ||
|
|||
In Remembrance
|
Just realized i'm not sure....is Alpha and the group fiona is gathering online one and the same?
paula
__________________
paula "Time is not neutral for those who have pd or for those who will get it." |
||
Reply With Quote |
06-21-2009, 09:27 AM | #22 | ||
|
|||
Member
|
No, I did not hear about Alpha until Carey told me a couple of days ago. I just suggested a new advocacy group because the intense conversation of the global accelerators thread suggested there was much energy that needs to be expressed in more than talk. I also didn't suggest a new group because I necessarily have the energy to lead it - while I suppose this is the same with many people here, right now taking care of myself and hanging on to my life is taking a lot of energy, and just focus and attention.
Nevertheless, I offered the specific model and proposed project plan I did in response to the posts calling for complete transparency and more focused action than talk. Now I wish those posters who requested that would speak up and contribute to the conversation ( as they can - I know we are differently able at different times) on that level, concrete ideas, or in the name of visibility, at least response to the ones that I struggled to put out there. |
||
Reply With Quote |
06-21-2009, 11:40 AM | #23 | ||
|
|||
In Remembrance
|
ok thanks fiona, i know what you mean. and when off, i say 'i volunteered for what???"
paula Quote:
__________________
paula "Time is not neutral for those who have pd or for those who will get it." |
||
Reply With Quote |
06-22-2009, 02:26 AM | #24 | ||
|
|||
Junior Member
|
have read to the point at which some recommend no committee or core group. personally, i wonder if such an approach is tenable. clearly not possible to include the entire pd community directly as i doubt every pwp reads this message board.
so, suggestion: make committee membership open to anyone who wants to commit by X date. rosie |
||
Reply With Quote |
"Thanks for this!" says: | DejaVu (06-22-2009) |
06-22-2009, 07:12 PM | #25 | |||
|
||||
Senior Member
|
Hi,
I am always very interested in advocacy groups. I am following this thread with interest. I haven't much to add at this point, as I am "new" to this specific forum/topic. I'll continue to follow this with great interest...carefully learning from others here. Thank you~ |
|||
Reply With Quote |
07-01-2009, 04:28 PM | #26 | ||
|
|||
Junior Member
|
Fiona,
I was luckily out of town when the "accelerator" thread was hot but was referred to it by my colleague and friend Paula, who also advised me to stay away when the 'pipelines' qualifications were being discussed, and MJFF was the object of many concerns about their incorporation of patient perspectives. As founder and one of the leaders of the Pipeline project in 2002, I am associated most closely with the PPP name, but by no means am I the whole organization. I dont think that we have met in person (I have a PD memory after 13 years dx), I want to share with you, as others have already done, how moved I was by your description of the "trust" issue with regard to patients. The paper that several of us wrote on "Ethics in clinical neuroscience" (see. http://www.pdpipeline.org/whatsnew/n... july 2007.pdf) raised some of the same issues about how industry, science, and regulators have earned this mistrust, but none have said it as articulately as you. I would like your permission to share your views with others that I come in contact with. For example, yesterday I was among small group of patient advocates from all disease associations invited to a listening session with the new FDA commissioner and Deputy commissioner, who are quite interested in increasing transparency in FDA processes. As I continually scale back my activities in the face of our relentless pd companion, I am looking for people like you as well as the others who I have known many years to take up the cause. This new organization idea may be just what we as an advocacy community needs. The ALPHA 1 organization could provide a structure to incorporate the voice of the patient more broadly if the organizers, all of whom I know, would like to take such a view. Discussions with PDF about merging with the pipeline project have gone on too long, making me concerned about their commitment to empowerment of the patient perspective. I only learned about this new organization, today. I have been reluctant myself to take on the formation of a new advocacy organization, but in collaboration with the organizers who apparently going about it in a thorough way, I think I and my colleagues in the pipeline project (if they choose individually, have lots to offer, including.
Perry Quote:
|
||
Reply With Quote |
07-01-2009, 04:56 PM | #27 | ||
|
|||
In Remembrance
|
perry,
the Alpha group is forming independently - they have a core group i think. fiona was referring to the forum, which for now appears to have decided on a book and/or poster [under consideration?] for next year's WPC. The option to update Linda's book is one possibility but whoever is in charge of the book project, as well as fiona and carey can tell you more about these endeavors. I think the pipeline will merge with pdf one of these years..lol..we are all procrastinators ....i don't think any other mergers are on the table. hey you might want to check with the group before you offer their services sir...geez if you are going to give us away, how about somewhere tropical? lol i agree that Fiona's writing is superb. She grasps it all and says it with honesty. paula
__________________
paula "Time is not neutral for those who have pd or for those who will get it." |
||
Reply With Quote |
07-01-2009, 05:12 PM | #28 | |||
|
||||
Senior Member
|
The ALPHA (Allied Parkinson's Health Activists) founding committee is meeting in August in Minneapolis. We should have something concrete to announce shortly thereafter. The goal is to create an organization that can accommodate many projects and patients, but we want the foundation, mission, purpose, structure, etc. to be firm before we open the gates.
__________________
Carey “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 |
|||
Reply With Quote |
07-01-2009, 09:22 PM | #29 | ||
|
|||
Member
|
Hi Perry,
nice to meet you, and thank you for the support and engagement. Yes, you may mention anything I said to anyone....I will have more to say about this whole movement, as it's become, and ALPHA and PPP, etc....just need some good catch-up time. Real soon though. Fiona |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Question..When lesions in the brain are forming can you feel it and is it painful ? | Multiple Sclerosis | |||
He’s turning his disease into a business plan: ALS patient advocacy | ALS News & Research | |||
PAN...1st Midwest Regional Patient Advocacy Conference | Parkinson's Disease |