I hate to sound stupid, but how exactly do you get involved in advocacy? Not how you did it, but how it would be done today at this stage? I and my husband have tried to contact people instrumental in working for people with Parkinson's, and there has been no responses (not anyone on this forum). For those of us watching and admiring everyone who goes to conferences and gets informed, we would like to be given instructions on how to make the firist steps. I would have loved to have gone to Glasgow, but how do you get the funds? Where can we find a list of future conferences so we can at least attend those near our homes. I have volunteered for three studies, but I don't see anything but record keeping coming from those studies. These may sound like silly questions, but I for one would love some Advocacy 101 exposure.

Ann

Those are excellent questions. I know it is frustrating to hear people extoll the wonders of involvment and yet leave no bread crumbs for others to follow. I am probably not the best to offer advice as I have mostly stumbled into the whole thing my accident and there are others who have taken a far more intentional path.

Where you live makes some difference. Some places have more active local groups than others. Recently I have (for instance) contacted the speaker of our state House of Representatives to ask him for help in getting April designated as Parkinson awareness month in my state to coincide with national and international designations. I was amazed at how helpful he has been and i am feeling fairly confident we will get it done.

If you are not a member of PAN I would suggest you join and actively participate in lobbying your local lawmakers, PAN will provide direction.

PDF offers training for advocacy. You can apply for that. I think it is like a snowball, once you begin. Those are only a couple of ideas, there are a great many more and I hope people will offer them because I honestly believe it is the best medicine we have available. It is completely restorative and, I am personally certain, neuroprotective. On top of that it is great fun.

Leave it to me, as they say in journalism, to "bury the lead." Or, in this case, to leave out the lead altogether in my perspective on the 2010 WPC. The question of how to get involved in advocacy, not "when I was a boy" war stories, but how to do it now, is hugely important. We need to bring new people interested in advancing education and awareness and influence about Parkinson's, both to increase the number of advocates out there and to replace those who have or will eventually reduce their commitment or retire from advocacy altogether as their disease progresses.

Anyone interested in PD advocacy can get started immediately. Here are some suggestions:

As several people have mentioned, PAN has the most organized and active advocacy network in the country. The organization has changed a lot in the last few years, in my opinion for the better. It is very much on the lookout for prospective new advocates. The Director of Outreach, who oversees the day-to-day activities of the Grassroots Network, is Haley Carpenter. Her e-mail is hcarpenter@parkinsonsaction.org. You can also reach her by phone at PAN at 800-850-4726. Let her know of your interest in advocacy, as well as where you live, including the name of your Congress person. It may take a day or two, but she will get back to you. If you already have a Congressional District Coordinator or a State Coordinator in your state, she may refer you to that person for more specific details on things that need to be done in your area. You can also look at the PAN in your state section of the website for the names and contact numbers of your local Coordinators. Haley will likely also send you a handbook for new grassroots advocates. If for some reason you don't get a response or satisfactory direction from either PAN or the State or Congressional District coordinator to whom you are referred, PM me here at this site and I promise to follow up with PAN. (note: PAN volunteer advocates and staff are currently reviewing the current structure of the Grassroots Network Program in order to improve its value to the PD community - any changes to the structure will be announced in March 2011).

To find out where and when conferences may be taking place in your area, the best resources are the websites for PAN, the Michael J. Fox Foundation, the Parkinson's Disease Foundation, the National Parkinson's Foundation, and the American Parkinson's Disease Association. Checking frequently with those sites will keep you abreast of any upcoming conferences in your area, and will also provide important information as to issues currently being worked on in the Parkinson's community. The NPF also sponsors support groups around the country. Contact them for a list of those in your area.

Large regional organization also offer plenty of advocacy opportunities. Googling Northwest Parkinson's Foundation, Parkinson Association of Northern California, Parkinson's Patient Support Groups of Northern California, Parkinson's Resources Oregon, Parkinson's Associations of the Rockies, Houston Area Parkinson's Association, or Parkinson's Association of the Carolinas, among others, should give you the contact information you to get started in those areas.

PAN is also having its three-day Public Policy Forum in February 2011. Those of you who live within driving distance of Washington DC can attend the forum personally with little expense. There are also a limited number of scholarships which will help to defray the costs of those who would like to attend in person but can't afford (scholarships are limited however, and details will soon be available on the PAN website). In addition, part of the Forum will be webcast, enabling you to attend without even leaving your home.

Even if you have only limited time to commit to PD advocacy, you can ask PAN to include you in its Action Alerts, which will notify you of urgent issues requiring support from the Parkinson's community on matters before the federal government. Using a computerized e-mail system, you can knock out a personalized letter to your Senators and Representative in under five minutes. You can also receive a daily briefing containing up to the minute news about current research, politics, and other matters of general interest to the Parkinson's community.

In addition to the reemergence of the stem cell issue as a front burner matter for our community, there are many current issues being tackled by PAN and the other national and regional organizations. So there is plenty of work to be done, and the Parkinson's Disease community needs your input and effort to keep moving forward.

Hope this helps, and apologies for not detailing this information earlier.

Greg Wasson

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^

I have to agree about - its the PWP that make the difference – more than anything else. Well said Greg and Lyndylanka & others.

Unfortunately, while this wonderful congress was going on, just a short ways away,
The need for advocacy, more knowledge of PD could have eased the suffering and tremendous pain, after having fallen over the threshold of my hotel in Glasgow, and dislocating my shoulder.

I didn't get to see much of any of the congress, so I especially appreciate these comments. With the exception of a lot of miscommunication, and lack of communication, at the hospital, etc, I met some wonderful people.
I finally made it back home to Oregon; USA.

At tremendous expense, my sister flew over to help me get home. I have filed a claim with Expedia but don't hold out much hope to recover much of the cost.

I am fighting my own body's dyskinetic uncontrollable spasmodic movement & involuntary muscle contraction that keeps trying to undo the slow healing after it dislocated twice more in Scotland. My balance, which was pretty good b4 this thrown off by the instinct to protect my shoulder at all costs – It caused me to pull ligaments in my right knee. so my mobility is - well - zero pretty much.

But I didn't decide to write this for a pity party, but to underline the need for a cure, for advocacy, to example the down side of social medicine and say I am ever so grateful to live in the USA. And publicly thank those who helped me when I needed them.

I was so sorry to hear about your fall. And I have a question related teo the incident: Would you go to another conference if it was something you could afford?

I ask thses questions in an attempt to compare how much traveling is going on among ther more advanced PwP. I chose not to go to Glasgow just 2 weeks before my deadline - and why? I feared that I would fall - just like you.

And did you travel alone? I am confident that my days to travel alone are gone. *unlless, of course, a better treatment or a cure is found."

Take care of yourself,Jingle Belle

Peg

I had done several trips both alone and with friends not that long ago. this particular trip, i flew there alone but had someone meeting me at Glasgow
& had arrangements to stay with her at the conference & after with her& her family. My fall happened after i met her & she was a wonderful help. I really feel like she saved my life.

would i go to another conf? not for a long time. lets see toronto WPC is in 4 years? - maybe.

the best to u as well Peggy

april

Blast from the past, the 2010 WPC

For those attending in Montreal in October, here is how we got here.
I had to read this paragraph twice:

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.....

Yes, I remember it well .... in 2006, we had to lobby to put a patient on the planning committee ... they relented, and Peg Willocks became our most able representative!! Those were/are the days ... patients still can't take representation for granted. Eternal vigilance required!

Thx, Bob for reporting this advocacy history that Greg Wasson so eloquently wrote just following the 2010 World Parkinson Congress (WPC) held in Glasgow. I wanted to mention a couple of people and situations that might be of interest to add to those mentioned.

First, I believe we need to tell you that People Living With Parkinson's (PLWP) was one of the first online " support groups" - and although I am a charter member, the co- founders were Nan Abraham from New York and Bren Tucker from Tennessee (ahem! My favorite state!). They were some of the first patient groups to encourage face-to-face meetings and did so at a Unity Walk way back ( 1998?). PLWP co-founders were also awarded the Bonander Humanitarian Award at the Unity Walk in 2002 and 2003), which is given for grassroots efforts in bringing PWP together. ( visit this link for additional info - http://www.unitywalk.org/about.php )

AnnT - one way of obtaining funding to attend such conferences is through your local support groups, who budget money for such travel. Another way is to get out there and request industry or business sponsorship. For example, a local newspaper may sponsor you in exchange for your story, often enjoyed by your
community readers.

As far as failures or at the very least "hesitancy" to open all presentations to everyone, including patients being allowed to be present at scientific presentations of research sessions, sometimes it is best to handle confrontational meetings in private. For example, should you disagree with something a presenter says, rather than making a scene during the presentation, you could wait until the presentation is completed then nudge your way to the front and discuss it privately. However, if you feel that you are well-informed about a topi being discussed, by all means wait for the Q&A period and make your comments.

Hope to see/meet many of you in Montreal!
Peggy aka The Peacemaker lol

Peace, Sister.
I do not favor disrupting a scientist's presentation. But the Q&A session after each presentation is for Q&A about the abstract of the scientific paper that has just been presented, and that you have not read, that discusses our disease at the molecular level.

Are there any presentations made by patients, that the scientists would be allowed to ask questions about?

Will there be a presentation about hidden, unpublished trials of Parkinson's drugs?
About Duodopa taking 10 years, and counting, to cross the ocean.
About DBS patients finding out that, three months earlier, there had been an "URGENT" recall?
About decisions made that resulted in a 2 year rolling shortage of sinemet, that was stage-managed?
About the almost total lack of services to PWP, at least in the rural area where I live. About the need for transparency and open talk about the good, the bad, the ugly and the beautiful?
About no one even bothering to follow up on what happened over time to the volunteers for the AMGEN GDNF fiasco?

No.

There will be a presentation of the new cherry-flavored agonist in bubble-gum format, showing that in the trials that were not hidden, it is better than a placebo. And then the audience can ask questions, such as, would it cost more than Duodopa to have a chocolate flavored agonist instead? And the answer will be, "that would require further research grants."