Dystonia Advocacy Network - Get Involved


Action AlertGet Involved
Getting StartedWriting Elected OfficialsAction AlertsMeeting with Elected OfficialsPhone Calls to Officials

Getting Started

It is important to know who your legislators are and how to contact them. The internet is an easy resource for keeping abreast of who your elected federal and state officials are and how to contact them.  Federal officials typically will have offices in their home districts as well as in Washington, DC and your state officials will also have offices in your state capital and a local office.  

Additionally, you can contact your US Senators and House Representatives. Call the U.S. Capitol Switchboard at 202-225-3121 or simply go to www.congress.gov and follow the instructions to obtain the information about your elected officials. Once you have that information, list it below and add it to your mailing lists.  

It is important to keep these persons informed of what work you are doing and what activities the group is sponsoring. Remember, these offices are a resource in the community, too, and it is not uncommon for people who have been newly diagnosed to contact a local legislator’s office to learn about available resources.  By placing elected officials’ information on your mailing list, your targeted communications will help your elected officials get to know you, and help them to serve the people in your community.

Remember to include your U.S. Senators, U.S. Representative, Governor, State Senators and State Representative.

Sharing Information – Getting the Word Out:

  • Call the local offices of your federal and state legislators.  
  • Introduce yourself and tell them about dystonia. 
  • Ask for the name of the health staff person in the local office and in the Washington, DC (state capitol office for state officials) office.  
  • Make a note of these persons. Share with them a brief summary of the mission of the DAN and the programs you offer.  

When calling:

  • Be prepared.
  • Be brief – concise
  • Be comprehensive

Put these elected officials and staff persons on your mailing list and e-mail.
Send them a holiday card and notices of any events you may be hosting.  
Keep them informed of what you are doing.  They want to know.  


Writing Elected Officials

Communications to elected officials make a difference.  Federal and state legislators rely on letters from constituents to let them know how people in their districts feel about matters.  The number of responses an official receives on an issue can actually determine how they vote on that issue.  

The following are tips for you to use when writing to your officials:

  • When writing to a legislator, make the letter personal – try not to use a form letter.
  • E-mail correspondence is also effective but, again, when time permits, sends a personal communication. 
  • If you are a constituent, say so.   
  • If you are responding to an alert and do not have the time to personalize the letter or e-mail, feel free to use the template provided.  
  • Mention the number of the bill or legislation you are writing about early in your letter or e-mail.
  • Be concise – try to say it all in one page – never more than two.
  • Be respectful – even if you are writing to express your disappointment in a recent voice or position the legislator took, you should be polite and select your words carefully.  You are building a relationship.

Send a copy of your letter to the DAN c/o DMRF, 1 East Wacker Drive, Suite 2810, Chicago, Illinois 60601. The DAN likes to track the number of letters sent on issues. 

When writing elected officials, address them in the following manner:

Writing a Member of the US Senate:
The Honorable (name)
Dear Senator (name)
United States Senate
Washington, D.C.  Zip Code

Writing a Member of the US House of Representatives
The Honorable (name)
Dear Congressman or Congresswoman (name)
US House of Representatives
Washington, DC  Zip Code

Writing a Governor
The Honorable (name)
Governor, State of (State)
State Capital, State Zip Code

Writing a State Senator or State Representative
The Honorable (name)
Governor, State of (State)
State Capital, State Zip Code

It is important to register your opinion on important issues. 


Action Alerts

From time to time, the DAN will issue a Legislative Alert – calling on you to voice your opinion on an important issue that affects the dystonia community.  These alerts will be issued only at critical times.  We ask that you respond promptly by writing an e-mail or by sending a fax.

  • Respond quickly
  • Be concise
  • Establish an Alert Tree – of families and friends who are willing to receive alerts and act quickly – this can be a huge boost to our legislative efforts.

Click here to see Current Action Alerts


Meeting with Elected Officials

Personal meetings, with an elected official or member of their staff, are a very effective way to raise awareness of the legislative needs of the dystonia community. These meetings should be coordinated among your group – especially if you are meeting with an official in their home district office.  The following are tips to help you have a successful meeting.

  • Confirm your meeting in advance by phone – this particularly is important if you scheduled the meeting in the home district.
  • Be on time – you may have to wait, but you never want to keep them waiting for you.
  • Be prepared – know what you are going to say, know your facts, and know what you want from the official.
  • Go in a group for greater impact.  Select a spokesperson and meet beforehand to coordinate who is going to say what.
  • Lead with a personal story. The spokesperson should tell their story – personal testimonies are memorable and help the legislator or their staff person better understand the scope of dystonia.
  • If you are a constituent, say so.  
  • Be concise and respectful of their time – stay focused.
  • If you do not know the answer to a question – tell them you will get them the requested information.  Do not make up an answer.  
  • Everyone should turn off cellular phones and pagers.  You do not want to create distractions from the brief time you have for the meeting.
  • Leave them with materials on dystonia and printed materials that support the request you have just made of them.
  • Do not be disappointed if you are meeting with a staff person and not the official. Meeting with a federal legislator’s staff person can be more helpful because they have more time for your meeting and to ask questions about your issue.  Staff members are critically important to the smooth running of an official’s operations. Meeting locations may vary from the office of the staffer to the hallway if space is limited.
  • Send a thank you letter following your meeting.  See the appendix for an example.
  • Ask the legislator or their representative for a firm commitment regarding an action or actions necessary in relation to your issue.

Additional Tips:

  • Meeting with a federal legislator may be easier to do when they are home in their district offices – they are often more relaxed and have more time.
  • Keep an eye on your local newspapers to learn when the legislator may be in the area.  
  • Because you have already introduced yourself and the DAN to the staff in local office, you can contact them, preferably in writing (a fax or an e-mail) to schedule an appointment for  the next time the legislator will be in the office and available.
  • If you are meeting with a federal legislator in a home office, let the DAN know of your meeting.  This will allow for you to receive the most updated information on an issue before your meeting so you will not be caught unaware.  For example, you do not want to ask the legislator to support or co-sponsor a bill that he/she has already signed. You will want to know this information in advance.

Phone Calls to Officials

Calling an elected official’s office can also be an effective means of registering your view on an issue.  If you are responding to an alert – calling may be the only timely way to get your position to the legislator before a vote.  

 The following are tips on how to make an effective call to an official:

  • Ask to speak to the legislator and don’t be surprised if you actually get to speak with them. If the legislator is not available, ask for the legislative assistant.
  • As with meetings – be prepared - know what you are going to say, know your facts, and know what you want from the official.
  • State why you are calling – reference the bill number or issue and say what you want from the legislator.
  • Say you are a constituent, if you are.
  • Be concise and respectful of their time – stay focused.
  • If you do not know the answer to a question – tell them you will get them the requested information.  Do not make up an answer.  

Additional tips:

  • If you are responding to a Legislative Alert – it is preferable that you call the Washington, DC office.
  • Call the White House and register your view on important issues.  You can reach the White House by calling 202.456.1111, between 9:00 am and 5:00 pm Eastern Time.