Just realized i'm not sure....is Alpha and the group fiona is gathering online one and the same?

paula

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.

ok thanks fiona, i know what you mean. and when off, i say 'i volunteered for what???"

paula

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

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~

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.

1. On going collaboration with FDA to recruit and train PWP as patient consultants during design and analysis phases of clinical trials
2. Collaboration with PSG on creation of 21st century population data through practice data in EMR/PHR (electronic health records, personal health records) and interoperable data exchange standards
3. Collaboration with 30+ other disease focused voluntary health agencies devoted to increasing roles for patients in all aspects of healthcare (working group on evidence based health care -

I will be following this note up with them directly. Every time I leave town something happens, but I am catching up now. pleased to meet you.

Perry

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

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.

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