Everyone who posts here, who has attended PAN forums, who has gotten educated about the science and politics of PD, who have then used your voices here and everywhere else to advocate for patients - have been heard by those with the power in PD research. You have been a true force to move the science forward. Of this I have no doubt.
We all are victims of, and players in, the times in which we live. We happened to get PD at a crucial time: at the advent of the internet. And we were blessed that Michael J Fox was one of us. As we congregated online, exchanging our experiences with each other and having scientific information available to us like never before in history, we discovered that our PD was nothing like textbook PD; that medications worked differently in each of us; that we were depressed or anxious or not sleeping or constipated or couldn’t sleep, etc, etc, etc. And it made us quizzical and then made us mad because science had basically stood still for the last 50 years – and we believed “them” when they told us we would be cured in five years – dopamine was so ‘easy’ – because that’s what we wanted to hear.
And we started asking questions. That’s where we get to the luck of Michael J Fox. He was, and remains, one of us. Active right here (on the old braintalk), exchanging notes and friendship with several of you, including Paula and Peg. Our great luck is that he was famous and smart and he thought like us. He could use the power of his connections to hire the right people, raise a ton of money, target and accelerate the research, and cure this monster.
Only this didn’t happen because his (all of ours) great plan and grand hope ran smack into reality. The science just wasn’t that simple. And progress couldn’t be made unless patients were included in the process. Because the answers lie in our bodies, our minds, and our experiences. Michael J Fox knows this, and the organization that bears his name knows this.
MJFF is doing already doing virtually everything you are talking about in this thread.
They are not using their money to duplicate and print more publications. They are investing $50 million of their own money to fund the Parkinson’s Progressive Markers Initiative (PPMI), a data collection study that will finally shed light on how PD biologically progresses in our bodies. Until then, new therapies are being developed in the dark. And putting their bodies where their mouths are, Debi and several MJFF board members are enrolled as controls.
They are taking the information and data gleaned from this study and putting it directly up on the internet, available to any scientist who wants it; who might have a new or revolutionary or even stupid or silly idea. The first data is already available and up for grabs.
They are in partnership with 23&me, plus have extended that partnership with Sergey Brin and his wife, Ann Wojcicki, who are matching all donations to MJFF through 2012, and Sergey’s mother, Genia Brin, is on the MJFF Patient Council.
That Patient Council has more than doubled in size, from 8 to 20 members in three years, and is brought together twice a year in meetings with researchers and is consulted regularly on other projects throughout the year.
Other patient advisory groups have been assembled to advise specific projects such as Fox Trial Finder and PPMI; they meet directly with researchers as well
MJFF knows and fully understands the unique nature of PD – partly because they read what you say here and listen to patients everywhere; partly because the science is beginning to prove our experience. As CEO Todd Sherer says, “we know it is much more than dopamine.” They get it.
The unfortunate thing about the time in which we live is that what is being learned will not be in time to save everyone. But that doesn’t mean good and smart people aren’t trying, or spending all of their time worrying about how to do better or more.
And it doesn’t mean your voices haven’t been heard or heeded. Because they have and they are. You would be hard pressed to find something here that they haven't thought of themselves - or thought about because they read it here.
Michael J Fox couldn’t, and wouldn’t have done what he has done if he hadn’t been inspired and influenced by all of you. And continues to be. I'd hate to think of where the research would be without him - if he had remained silent in the face of all this. But he didn't, because he knows we are right.
It was the best of times, it was the worst of times. We have fomented a revolution. Of this I have no doubt.
“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