What Does Being an Advocate Mean?

My definition of advocacy is making your voice, your position, and your passion known to those who will listen to your message. For over 20 years I have tried to educate my Senators, my Congressmen, and their staff members on the needs of the Parkinson's disease community. Sadly, there is a tremendous gap in the general public’s understanding about Parkinson's disease and all its important nuances.

My first visit to Capitol Hill was filled with nervousness, anticipation, a little intimidation, and a great deal of excitement. The halls of Congress are full of majesty, history, and preserved artistic wonders. The soaring arches, the long halls of marble, and the rushing crowds throughout the corridors invoke the seriousness and importance of your mission. You are there to educate, inform, and be a catalyst of change for the community.

Your best and most effective tool for change is your personal story. I have encountered numerous staffers, both senior and not, who are influential advisors to their congressman or congresswoman and are advising on issues concerning Parkinson's--only they've never met anyone with Parkinson’s disease. Hearing your story is important for them to learn the struggles that come with illness and what you expect and need from your government.

Getting your message across

Here are some important points that you should pay attention to when advocating and getting your message across:

• Stay on point — Practice your introduction before you meet with your representative. Make sure you tell them who you are, where you are from, what you want, and how the issue that you are advocating for has impacted your life.
• Make it personal — Your time to talk to your representative and their staff is usually rushed, so it is crucial that you get your message across as clearly and succinctly as you are able. Offer your help and let them know that you are willing to be a resource for them.
• Emotions are good — This is your opportunity to make a real difference and to make a lasting imprint on your legislators. Explaining your troubles, hardships, and medical frustrations are part of your story that personalizes your visit as they get a glimpse into your world.
• Be yourself!
• Leave your information! Make sure that you get the card of whomever you meet with and send them a thank you note for the meeting.
• Be grateful and be polite!
• Don't go over your allotted time!
• Stay in touch!
• Keep involved and informed on your issue! Read the press releases, blogs, chat rooms, and articles to keep up on the fast-changing news related to your cause!