[jeanb]

I'm starting a new thread from AnnT2 & PKell's posts - hope that is OK.

Originally Posted by AnnT2

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

Originally Posted by pkell

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.

[jeanb]

i stumbled my way into advocacy, but here are some ideas. As Pam wrote, I hope others will share their experiences.

Learn all you can about pd

Join PAN – contact your PAN State coordinator to learn how to get involved

See if your state has an NPF or APDA have a chapter

Contact them to see if they need volunteers
Ask how you can help them

Join a support group

Start a support group

Talk to support groups

Lobby your state legislators about issues important to pwp

Write letters to the editor

Respond to newspaper or web articles or letters to the editor

Write a blog / respond to blogs

Write your story/ Tell your story / Share (publish) your story

Create a poster for awareness

Help the PD community by raising funds for:

Research
Awareness
To help other pwp

[jeanb]

Find someone who has a big dream and do what you can to help them!

http://www.popsride.com

For example, there is a team of 4 young men who plan to ride bikes across the US beginning in April 2011 and raise $1 million for PD. I’ve met two of them and their dad. But they need help in a big way:

Places to sleep along the way (homes churches, schools)
Support vehicle & supplies
Food & water
Bike parts
Clothing & gear
sponsors

They need help and support - I hope they will succeed but they won't be able to do it alone.

Jean

[GregW1]

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. Google 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 he 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 the area.

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

[jeanb]

Greg is the man!

You can sign up for PAN's Action Alerts here.

Jean

[pkell]

One thing I would like to add. Advocacy may sound like altruism at its apex, but the truth is the rewards do not go to those you are advocating for, though that of course is a lucky by-product, but rather to you the one advocating.

There is no feeling that compares to coming out of the darkness and standing side by side with other PwP refusing to be silent. There is no substitute for the sense of power that comes from joining with others to make your voices heard. There is no joy like joining the communion of those who are striving to gain a seat at the table for the PwP and knowing that your participation no matter how small, is still a part of the progress. There is such a regained sense of being relevant that comes with grasping the genuine truth in

"TOGETHER WE ARE BETTER. TOGETHER WE CANNOT BE STOPPED."

[violet green]

"TOGETHER WE ARE BETTER. TOGETHER WE CANNOT BE STOPPED."[/QUOTE]

Pam rightly says that together we're better. And we do need to unite to make changes. But one size doesn't fit all of us. Other folks have suggested joining support groups. That didn't work for me even though I love working in groups. So if any of the ideas given don't appeal try another or gather a group around you if that's your preferred style.

Another thing that l personally enjoyed was to join a local fund-raising event like a walk. Last spring I did my local one and also the Unity Walk in New York City. There's nothing like it -- a sea of people all raising funds and awareness to fight PD -- we are better together and you'll feel tired but high at the end of the day.

Ann, you've found this forum and I did too. It's been a great place for me to learn about PD from our experts, PwP. And to connect with others perhaps more like-minded than those in your geographic area. Also forum members post opportunities to participate in various campaigns and other actions here. Maybe you'll be as lucky as I was. I volunteered to work on the book project. By taking that leap, I've gained a new group of wonderful friends, I never lack for something to do and have had new, challenging experiences when I thought my world was narrowing --- now it 's expanding with global awareness and activity.

Katherine

[paula_w]

Ann,

Don't you live in the Philadelphia area? Katherine does too. Maybe you could talk or get together?

[violet green]

Originally Posted by paula_w

Ann,

Don't you live in the Philadelphia area? Katherine does too. Maybe you could talk or get together?

Thanks, Paula for making the connection.

Ann, I just sent you a private message with my email. Let's try to connect.

Katherine

[jeanb]

I'm not a member of a support group either. In fact there is one in my community and they are mad at me because I won't join (go figure )

Like Katherine, I have made wonderful friends on line. That's how my buddy, Sheryl, and I met and started pdplan4life. Even though she is in Illinois and I am in Arizona, we work well together. And we're going to be teaming on a project with folks from other countries whom I met at the WPC.

Jean