The power of e-advocacy in spreading Parkinson's awareness

Sheryl and I are advocates who are learning to use the power of the Internet in multiple ways to connect with people with Parkinson's around the world. We are exploring the concept of E-Advocacy (Electronic-Advocacy) which is an internet-based approach that uses websites, blogs, on-line message boards, social media like Facebook, databases, and emails for reaching online supporters.

Social media:

Social media is an entirely new place for information sharing. It is a virtual world where people meet their friends, chat, share photos and events, and are members of groups. Facebook and MySpace have hundreds of thousands of members around the world. I have a page on Facebook, I am connected to several friends, and I am a member of a number of Parkinson's groups including:

• PdPlan4life
• World Parkinson Congress
• Parkinson's Action Network
• actionpd.org

Social media exposes pdplan4life to large groups of people, many of whom may link to our site from blogs, message boards, and in emails. These links go out to so many diverse people, that it drives our site closer to the top of the list of results generated by the search engine. The higher we appear in the list, the easier it is for people find us.

Posting on-line:

Patients Like Me is an on-line message board, where members exchange information with other people with Parkinson’s.

There are many Parkinson’s blogs to read and comment on (like bibmomma).

Every time I post a response to a message or a blog, I include a link to pdplan4life, which in turn brings new visitors to the site.

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Crossing national borders:

The power of the Internet has made the world a smaller place. Just recently a woman from Puerto Rico emailed us asking for information about Parkinson’s to help her father. We searched the Internet, found Parkinson’s websites in Spanish, and emailed the information to her. And earlier this year when a person with PD in England emailed us in distress and looking for help. We emailed a Parkinson’s organization in England and asked if they could help her.

Chances are you are an e-advocate
and don't know it

• Did you sign the on-line petition for a PD Stamp?
• Have you ever forwarded a pdplan4life link to a friend or family member?
• Do you participate in an on-line support group like Patients Like Me?
• Are you signed up for legislative “Action Alerts” from the Parkinson’s Action Network?
• Do you have a “Facebook” or “Myspace” account where you are a member of any Parkinson’s groups?
• Are you signed up to receive email notices when pdplan4life is updated?
• Do you add a link in your signature block so others can easily visit a PD website?

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email us directly at: Sheryl@pdplan4life.com

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Without express written consent, this material may only be used for your own personal and noncommercial uses which do not harm the reputation of PDPlan LLC, provided that you do not remove any copyright. To request permission to reproduce, please contact PDPlan LLC at Sheryl@pdplan4life.com