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How to be an advocate

"I am not a scientist, doctor, or politician. I am just the girl next door. I help in 'fighting for a cure' with the Parkinson's Action Network. PAN proves, through many accomplishments, that one person can make a difference."

Patti Lightner
PAN State Coordinator, Pennsylvania

If you are interested in doing something constructive to help the fight against Parkinson's, being an advocate is a way in which you may be able to help - a lot! You don't have to be a person with Parkinson's (PWP). If you're interested in the cause and willing to work, you can make a difference.

PAN - the Parkinson's Action Network - is the education and advocacy group which, backed by the Parkinson's Disease Foundation and other Parkinson's organizations, represents the Parkinson's community in Washington and in increasing numbers of states to ensure that the viewpoint and the interests of PWPs are heard in the Capitol and the White House.

But PAN can be no better than the people who work for it, contribute to its vision and carry its message to the grass roots in every state and city.

It doesn't take any special skills or experience to be an advocate. What it takes is a certain measure of time, plus determination, energy, and courage to deal with the people who are in a position to make decisions that affect the lives of people with Parkinson's.

Here are some of the bread-and-butter activities that can help move the cause of Parkinson's forward:

  • Find out where your member of Congress and your senators stand on issues such as PD research funding, and stem-cell research. (They'll let you know if you write or call them. PAN can help with contact information, if you run into difficulties.)
  • Meet your member and your senators when they're in town. You can call and request a meeting, or you can attend a congressional "town hall meeting". Sharing your story face to face is the most effective way to encourage your elected officials to become champions for PD research.
  • Write guest columns, op-ed pieces, and letters to the editor in your local and state newspapers.
  • Give a talk at a rotary club, elementary school, local church or book club. Tell people your story and ask them to help.
  • Hold a PD Fundraiser: a silent auction; dinner benefit; golf outing; a night of music; a walk for a cureÖor whatever you can think up, to spread the word to different audiences and the media in your community.

Here's what Nina Brown, of Houston, has to say about the roles she and her husband play:

"When I was diagnosed with Parkinson's in 1985, my husband Joe and I refused to allow our lives to begin to end. We joined the Parkinson community to fight for a cure. As volunteers, we both work at the local, state and national levels. We enlist friends and family in other states to contact their representatives or to open the door for us to speak on their behalf."

Here's Patti Lightner again:

"You never know what may happen when writing to community and state leaders. A recent letter I wrote to Governor Rendell of Pennsylvania resulted in my testifying with others about the importance of earmarking Tobacco Settlement money for medical research on Parkinson's. I had no knowledge this money even existed. Now there's a good chance that PD research will receive some of it."

A first step is to get in touch with PAN to see where you might best fit into their network of advocates. Laura Jane Cohen is the coordinator of the national grassroots effort and can be reached at (800) 850 4726, or e-mail: ljcohen@parkinsonsaction.org. Among other things, she will be happy to provide you with a kit of information on working as an advocate, including addresses and phone numbers of Members of Congress, the proper way to address them, and model letters to send to political leaders.

Here's a final message from Terry Bowers, PAN State Coordinator, Texas:

"Advocacy means I put away self and serve others by standing up and educating, whether from public speaking, or published writings. Activism is about showing others how to become pro-active instead of re-active. Being a champion is simply to be able to explain to elected representatives how the legislation they enact has consequences on our lives, as well as the lives of our loved ones.

Advocacy to me is leaving the cause in better shape than when it was first found"

PAN needs advocates virtually everywhere! Here are some specific states in which we are currently seeking state coordinators: Maine, New Hampshire, Vermont, Massachusetts, Connecticut, Rhode Island, Mississippi, Arkansas, Oklahoma, Nebraska, South Dakota, North Dakota, Montana, Wyoming, Utah, Arizona, and Idaho.