PARKINSON’S MOVEMENT: A movement for change

[JonStamford]

PARKINSON’S MOVEMENT (parkinsonsmovement.com) and its community website (parkinsonsmovement.healthun... is a new concept within the Parkinson’s community, based around the most important resource available — ourselves!

Nobody understands Parkinson’s better than us, the patients. Nobody understands the condition, the treatments and their side effects better than those who live with it every day. And nobody knows what we want from future treatments better than us.

We believe that Parkinson’s patients should take a bigger role in our own present and future treatment. And we will do this through knowledge, information and the sharing of collective experience. We need to learn about our condition, to manage it, to understand it and above all to take control of it. We need to fight ignorance and fear with knowledge and hope.

PARKINSON'S MOVEMENT will provide engaging content, thought-provoking analysis and accurate information to the Parkinson's community. PARKINSON'S MOVEMENT will canvass opinion, stimulate discussion and elicit responses, and communicate your thoughts to opinion formers. We will listen and we will act. PARKINSON’S MOVEMENT will be a voice for Parkinson’s by being the authentic voice of the community.

It’s time to engage, to take a leading role not only in our own treatment but in the future. It’s time for us to drive the healthcare and research agendas, to say what we need today and what we want tomorrow.

It’s time for us to lead, not to follow. Log in and join in!

[BunnyTheOctopus]

"It’s time for us to lead" Who is US in Parkinson's Movement?

"We will listen and we will act." Who is we?

I note that Health Unlocked is a Private company. Now that I have joined this site do I get chosen to speak for us? Do I, or any others who have joined have a say in the running of the company.

I have had Parkinson's for 15 years and I want to contribute my wealth oh

f knowledge of the condition to anyone who will listen, but my price is transparency and the right to hold different views whilst working for the key to unlock a cure so that we may be free

[CPT_Helen Partner]

Could you click onto parkinsonsmovement.com and you will find a wealth of information about Parkinson's Movement. It isn't a company, it is a group of people with Parkinson's coming together to try and influence change. Health Unlocked manages the community aspect of the site, with information being driven from parkinsonsmovement.com We are working on ways to make it easier to flip between the two areas, as it is not as easy as it could be at the moment. Many thanks. Q

[BunnyTheOctopus in reply to CPT_Helen]

I went to parkinsonsmovement.com and I didn't find a wealth of information!

Who are the leaders? Who makes the desicions? Who is consulted and who pays the bills?

There is a saying "He who pays the piper, calls the tune" so who is the Piper?

Before I commit myself to ParkinsonsMovement I would like to know the answers to these simple questions, in the interests of transparency.

[JonStamford]

Hi Bunny,

PM was started by The Cure Parkinson's Trust and run currently by mysef, Sara Riggare and Tom Isaacs.

We seek opinion from the PM community and receive support to run the website from a number of sources, all of which are listed on the parent site.

We welcome your thoughts and opinions, whether given in your own name or under a nom de plume

Jon