As others who attended the WPC in Glasgow have said, Bryn Williams' speech was remarkable and truly moving. It was a fitting introduction to the three days of meetings and presentations that followed. I think the most important words spoken by Bryn were these:

"All of us arrive at this Congress with a common goal. To improve the lives of people with Parkinson's disease... But this is not just a science meeting. This is a Congress. This is a gathering of the whole Parkinson's community and the patients and carers bring an extraordinary contribution..."

The first WPC in 2006 was a historic gathering of researchers, clinicians, and the patient community. By the standards of that time, it was an extraordinary success. But it was hardly a "Congress." Very few scientists attended any of the patient presentations. There was open hostility between a significant minority of the scientists and patients in attendance. A small group of patients, still hurting after the decision to terminate the clinical trials for the neurotrophic factor GDNF, expressed their anger by disrupting some of the scientific presentations, and some scientists walked out of the meetings, furious at the nerve of patients to question the wisdom of those whose titles included the letters M. D.

Early during the planning of the 2010 Congress, an influential minority of physicians attempted to bar patients altogether from the scientific presentations. Fortunately, through the efforts of people such as Tom Isaacs (chair of the patient's committee for WPC 2010 and a member of the steering committee organizing the Congress), and the principal organizers of the first Congress, the Parkinson's Disease Foundation in the persons of CEO Robin Elliott and Dr. Stanley Fahn, cooler and more inclusive heads prevailed.

WPC 2010 was a significant and historic improvement upon the work begun in 2006. Although patient presentations (aka “quality of life” presentations) were still only sparsely attended by clinicians and scientists, a significant shift was evident with regard to the need for and role of the patient in solving the riddle(s) of Parkinson's. Patient attendance at "scientific" presentations was significantly greater than in 2006, and patients and carers were treated not only with respect, they were listened to in a way that was all but absent four years earlier. Everywhere you went scientists and physicians emphasized the need for greater patient input, and in some remarkable instances actually apologized for their failure to listen to patients in the past.

WPC 2010 was still not a "Congress" in the sense that co-equal participants assembled to chart the future in the fight against Parkinson's, but anyone who was at the 2006 event was acutely aware that a qualitative shift had occurred as to the patient's role in the process.

So, how did we get here? How did we reach this point where patients and carers, once dismissed out of hand and told to leave the solution of their problem to the scientific community, have become active participants working in collaboration with scientists and researchers, making common cause against a common enemy?

Without question, the hard work and dedication of many of the members of this forum over the last 10 years has been, and continues to be, a significant factor in the rise of patient advocacy in both the US and abroad. Members of this forum, from some who were here in the year 2000 to some whose contributions began only recently, have helped to create the patient advocacy movement as we know it today. The members of this forum deserve not only my personal thanks, as a patient, but the appreciation of patients, carers, and scientists across the country and beyond.

I can remember coming to this forum, then known as Braintalk, in late 1997. There was little discussion about science, potential cures, and certainly not about patient activism. It was more like a support group in which the members talked about books and baseball and their grandkids. It provided comfort and support, and continues to do so today. But by and large its members had more or less accepted their fate and were not engaged in active struggles to find a cure, new treatments, or effective therapies.

When Michael J. Fox announced that he had Parkinson's in 1998, there was intense interest, but it centered around personal concern for him and the fact of his celebrity. Like many other people with Parkinson’s, however, Michael was already using this forum to find out more about his disease and find support among his fellow patients. He was chatting, first incognito, later as himself, with a small group of patients who would regularly gather to chat together. Among that group were Paula and Peg, and others who were also founders of the Internet patient group People Living With Parkinson's, or PLWP.

After Michael's appearance before the U.S. Congress in 1999, interest in patient advocacy began to appear in Braintalk. By 2002, there was a small but intense group of patient advocates who would eventually go on to devote themselves to raising consciousness about the disease, raising money to fund research, and raising hell here, in Congress, and in the larger community.


This forum was a pioneer in patient advocacy in so many ways.

The first discussions I know of regarding cognitive impairment short of dementia occurred here in 2001 and 2002. There were also threads about depression, loss of smell, gastrointestinal problems including constipation, and problems with eyesight, all of which would occur years before they were recognized as components of what was then considered to be purely a movement disorder.

A significant number of forum members also took their first bite of the apple of political and educational advocacy, most of them allying themselves with the Parkinson's Action Network, or with regional organizations like the Parkinson's Association of the Rockies, the Northwest Parkinson’s Foundation, the Houston Area Parkinson's Society, the Parkinson's Society of the Carolinas, and the young onset seminars held by the National Parkinson's Foundation.

In 2001 PD forum allied themselves with the members of the ALS forum to create a petition urging President Bush to lift restrictions on stem cell funding by the federal government. This was before the president announced his policy virtually shutting down federal funding for this research (August 9, 2001). The work of people such as Thelma, and so many others, eventually produced a petition containing 20,000 signatures, which was personally delivered to then Health and Human Services (HHS) Secretary Tommy Thompson's office.

As the decade continued, and Braintalk morphed into Neurotalk, the Parkinson's forum was filled with members doing whatever they could to make a difference in the fight against this disease. And as importantly, they began to realize how important patients were to the struggle. They began to ask, then demand, and then get seats at the table where decisions about them were being made. There are so many people, some now gone but many still active whose names you see everyday on this board, who have made and continue to make a fundamental difference in the fight against Parkinson's disease. They work tirelessly and without pay, and often without much in the way of thanks outside of this small community. But the 2010 WPC would not have been the tremendous breakthrough that it was without the contributions of so many people from this forum. It was my privilege and honor to meet many of them, who sacrificed and scrimped to find the money and strength to make the trip to make another difference in Glasgow.

And that brings me to the most important consideration of all. Has all of this hard work and sacrifice by so many folks on this board made a difference in the fight against Parkinson's disease? The answer is emphatically "yes."

Patient advocates from this forum have helped legalize and fund embryonic stem cell research in several states, established patient advisory roles in government offices, put forward and passed legislation creating registries of the Parkinson’s disease population, worked with the medical community to inform and train staff, and held industry partners accountable for more responsible and transparent clinical trials. They have helped pass legislation giving veterans exposed to Agent Orange a conclusive presumption that the exposure caused their PD, making them eligible for VA benefits. They have fought in Congress to eliminate unreasonable reimbursement caps for patients requiring physical therapy.

The Parkinson’s Disease Foundation and the Michael J. Fox Foundation have created patient advisory boards, and they listen to them. In addition to its Grassroots Advocacy Program, grassroots advocates occupy three seats on the Board of Directors of Parkinson’s Action Network. PAN also has created a policy committee and other steering committees composed of grassroots advocates. And the list goes on.

As the voice of the patient has increased, doctors and scientists are proposing new theories about our disease that may overturn paradigms that have governed research into Parkinson’s for 100 years. The most dramatic and obvious is the Braak staging scheme. Braak and his colleagues have proposed that far from being a simple movement disorder, what we call PD is a systemic disease originating in the brainstem. They argue that the involvement of non-dopaminergic structures long precedes involvement of the substantia nigra and the appearance of motor problems. This staging scheme has already had a profound influence on current thinking about PD. Questions are also being asked by both patients and scientists about the value of traditional models for clinical trials, including animal modeling.

These new directions in Parkinson’s research are not a step backward. On the contrary, they represent great strides forward, a Renaissance, if you will, in our understanding of Parkinson’s disease. The road to a cure has turned out to be longer than we thought it would be in 1999, but its new course promises to be straighter and more true.

And now it appears that the road may be quite a bit shorter than we had supposed even six months ago. Why does it take approximately 6 ½ years for cardiac medicines to get from bench to bedside, while it takes an average of 15 years for Parkinson’s medications to make that trip? The answer is that there are no biomarkers that can scientifically demonstrate the presence or progression of the disease. Reliance for 200 years on clinical observation (eyeballing the disease) has greatly hindered the progress of scientific research. But now the Michael J. Fox Foundation for Parkinson’s Research has initiated an unprecedented $40 million quest to find biomarkers (physical biologic indicators) for the presence of the disease, the stage of the disease, and hopefully biomarkers which will tell us whether a treatment can stop or reverse Parkinson’s in patients. Having biomarkers will dramatically shorten the time from bench to bedside of new and more successful drugs and other therapies.

And to top it all off, after a great battle over the neurotrophic factor GDNF, largely fought by a patient coalition that included several members of this Forum, new GDNF trials are being organized after Amgen quietly licensed GDNF to a small group of doctors and researchers who believe in the great possibility of this treatment to halt and even reverse the progression of Parkinson’s.

Together, patient advocates, scientists, and industry are going back to re-chart the future in the fight against Parkinson’s disease. No small part of that future will be due to the past and ongoing efforts of so many of the members of this great place called Neurotalk.

Thank you so much.

See you at the Dance,

Greg Wasson

I took great note that you pointed out that eyeballing our symptoms just won't cut it anymore. I have folded my arms across my chest and stood up from a chair, drawn clocks, walked that hallway and back, had my doctor rotate my hands looking for cogwheeling, and tapped my thumb and forefinger cooperatively, but none of these exercises is getting me anywhere. It's updating my condition, but I am not looking for a situation in which my decline is being documented no matter how exact the documentation is. I have had PD for fourteen years, and I have just about given up on the five-years-to-a-cure concept. However, if you feel hopeful, I will redouble my efforts as a research participant here at Pennsylvania Hospital. Bring on those numbers and letters to remember and recite backwards and forwards. Let me match those lines to the radii on the flip card. Just find us a cure.

Ann

Greg you continue to pop up in my life every so often when I need reassurance of why I am or do what I do. You know I have a belief that the Parkinson's community needs the general public to step up and support finding the cure for these diseases that lurk in the background of so many families.

I started doing an ancestry of my family and have found both Parkinson's and Als have played dominate roles in my ancestors lives and indeed in my own, as well as Cancer.

When we feel the pressure in our own lives then will we feel the pressure to get out there and do whatever it takes for the Cure.

Oh my how I will be quoting you once again my friend.

Take care of you and yours and all else will fall in place.

ps
How is Aj doing? Give my regards to her.

As always with respect Thelma

Greg: Terrific piece! Can Lindy borrow some (or all) of it for a =postscript to the book? Bob C

Ann T and Bob C - Two of my favorite folks from the previous century, and we are all still kicking, or at least shuffling and making some noise.

Bob, use as much as you want, as you guys see fit. When I run out of hot air, you'll know I'm dead.

Greg

we could use you greg. it needs to be international. hope you hang around and thanks for the credit ....it does feel good when you don't expect it, but has not been what has driven us. we need to train reinforcements who are independent [patient advocates]

we have the scots and the english. Aussies? Canadians?

but we have to finish the book first. i will repeat here that i think a global email list is needed first.

this is another fine piece of writing, we miss your writing and the comfort it provides. as with ann's too. we need your advice and inspiration more than once a year. we are getting tired. hang around won't ya?

thanks greg

Thelma, my goodness it's good to hear from you. You have been giving care here, as well as uncountable hours of time and effort, for as long as I can remember. It wouldn't be what it is without you.

AJ is doing fine, all things considered. We continue to progress slowly and continue to hope.

Take care and keep on keepin' on.

Greg

Paula - Scout's honor, more than once a year. When I saw the Creative Collective contingent in Glasgow, it inspired me. As do you - can't keep a good advocate down.

Hope to see you soon,

Greg

As she tries to decide whether to DBS or not, she suggested that the theme for the Montreal WPC should be Focus on the Cure. i know there is a pd group by that name. but the push should be consolidated and unified. big splashes of pr...think of a catchy name instead of focus on the....closer to the cure. but let it be the dance that we keep saying we'll have..
peg and i talk about and want to have a pd prom and dance all night.

Greg,
Many of the people you have mentioned and the thinking that emerged from this forum and it's predecessors have the honor of having sustained not just us vocal ones, but the quieter and more hidden PwP who come here looking for comfort, hope, and some kind of sense that they can survive with this disease.
And hopefully one day be able to say Pd is no longer something to be feared, and it will take no more of our elders, and no more young people, and will be understood, treated and cured.

Personally I can state unequivocally that the people here have made more of a difference to my life than all the medication and medical personel I have encountered, and I have to give thanks for the tenaciousness of people who have consistently supported this community for such a long time.

The overwhelming sense that came out from the Congress was that this is the time to go global with advocacy, and reach out to PwP everywhere. The journey that has been made from being a social community to this is very special, and I would ask that wherever people are in the world who read this wonderful post by Greg, please help make this a turning point for PwP.

Thank you all you long term advocates!! We need all of you still.