Dystonia Advocacy

• What is advocacy?
• BEBRF and the Dystonia Advocacy Network
• What is an Action Alert?
• How to respond to an Action Alert
• Dystonia Advocacy Network website

Advocacy is a process whereby ordinary people, like you and me, are committed to working together to influence positive change in our government by making our personal stories and opinions known to our elected representatives. You do not have to be an expert in government affairs to be an advocate. You can share your knowledge about blepharospasm and the impact it has had on your life and your family's life to make our elected representatives aware of our disorder. Many elected officials have never heard of blepharospasm or are aware that it is a form of dystonia. They need to be aware that, sometimes, blepharospasm can interfere with our ability to work and support ourselves and our families. They need to be aware that blepharospasm can mean the difference between seeing and being legally blind. You are the expert in this area and you can help.

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Previously, various dystonia organizations competed for limited resources and the opportunity to influence lawmakers. It was concluded that the dystonia organizations want basically the same things, so we decided to join together in order to have more impact in the advocacy arena. The Dystonia Advocacy Network (DAN) was created with a mission of speaking with one voice for issues affecting dystonia patients and their families. Members of the DAN are Benign Essential Blepharospasm Research Foundation, Inc. (BEBRF), DySTonia, Inc., Dystonia Medical Research Foundation (DMRF), National Spasmodic Dystonia Association (NSDA), and National Spasmodic Torticollis Association (NSTA).

Advocacy volunteers representing all the groups involved in the DAN meet on a regular basis to share ideas and strategies for influencing Congress. Advocacy materials and training are provided to make it easier for patients to be good advocates.

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When issues important to us are ready for a vote or decision by Congress, a legislative Action Alert will be prepared and e-mailed to you by BEBRF, alerting you to the issue and giving you background information to prepare you for your advocacy efforts. It is critical that you keep the BEBRF office informed of your current e-mail address so that you can be a part of this effort.

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1. The Alert will contain a direct link to the DAN website"s Action Alert section. Click on it.
2. Enter your zip code and click on "Go".
3. Under "Compose Message" choose to whom you want to send your message and whether by letter or e-mail.
4. All the information regarding the issue will appear in an uneditable text. If you wish to add your story, briefly enter it in the box provided and check your spelling.
5. Complete the sender information and preview how it will look.
6. Click on "Send Message" if you are sending an email.  If you wish to fax your letter, choose "Print Letter". Sign your letter and fax it.

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The DAN website contains most of what you need to become an informed advocate. It also contains information on Dystonia, the DAN, and advocacy opportunities.