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Advocacy Toolkit

Contacting your representatives about Chiari, syringomyelia and related disorders

Families affected by Chiari malformation, syringomyelia and related disorders have difficulties that only they can speak to— which is why CSF is here to help you bring your voice to your political representatives and ensure that public policies work for YOU.

Step-By-Step Guide to Advocacy

Get involved in advocacy for patients living with Chiari, syringomyelia and related disorders but aren’t sure how to get in contact with your local representatives and officials? Here’s a quick step-by-step on how to get started. Make sure your voice is heard!

Don’t be embarrassed if you don’t know your senator or representative off the top of your head—many people do not, and it is very easy to find out!   To find your Senator: Go to www.senate.gov and find the drop-down menu “Find Your Senators” in the top right hand corner. Scroll to find your state, then click.   To find your House Representative: Go to www.house.gov and enter your ZIP code in the top right hand corner and click “Go”. Your Congressional representative will come right up!
There are several ways to find bills that have yet to be passed to become law. The simplest way is to search online and find a website supported by the government or Congress, itself. These websites will allow you to filter out bills by category (Health), making it easier to find legislation that directly affects you or your loved ones.
You can contact your local senator and representatives via their office phone numbers. You can find these numbers when searching using the links above, or by calling the U.S. Capitol Switchboard (202) 224-3121.
It is true, you will not be immediately connected with your senator or representative. You will be connected to his or her aide when you call, but this does not mean your call goes unnoticed! The representatives' aides are required to make a note of all communications that come through the office for the member of Congress to review later on. Don't forget: it is important to remain confident in your position and to keep your call brief, and to-the-point. Make sure you mention:
  • Your name
  • That you are from the senator’s state/representative’s district
  • (*If applicable) That you are a supporter of the senator/representative
  • The legislation/issue that you either strongly support/oppose and why you support/oppose it.
  • Afterwards, you will even be able to request a written response for the contact you made that day.
Of course!  A well-written, beautifully executed letter from a passionate individual can be a powerful tool in swaying a senator or representative who may be on the fence about a particular issue.
Yes. To address your Senator in the Senate: The Honorable (Name) (Room)(Name of Senate Office Building) United States Senate Washington, D.C. (ZIP code)   To address your Representative in the House: The Honorable (Name) (Room)(Name of House Office Building) United States House of Representatives Washington, D.C. (ZIP code)
Not at all. The missing contact information is available to the public and can be found when looking up your senator or representative on the government websites above.
  1. At the end of the day, what kind of letter/email would yoube willing to read?  Remember: Write Tight!  You would want to read a message that is brief and to-the-point.  Reading a 4-page letter isn’t something that most people are willing to do.  It is also important to write a confident and passionate letter, avoiding tones of anger. For example, by writing “Dear, _______” rather than “To Whom It May Concern,” you convey a warmth that the reader can feel and you begin a gracious dialogue rather than a harsh critique. Even the addition of a few “please” and “thank you’s” can go further than you’d think!
  Finally, if you can make it personal— definitely go there!  There is nothing more persuasive to Congress than hearing about a certain political issue from the point of view of an individual that has to deal with the problem on a daily basis.   In summary:
  • Be brief, and to-the-point (no more than 1 to 1.5 pages)
  • Be passionate, but polite
  • Make it personal: tell yourstory
A template is an easy way to get you started, but by giving into that temptation, you may not wind up writing your own letter at all! And sending a generic looking form letter may even cause your letter to be piled on top of a whole bunch of far-too-similar advocacy letters. Even worse, since these letters often go unread and are categorized by topic, only, it is possible that you may inadvertently advocate in support of the issue you were actually against!   It is best, instead, to follow the above guidelines and the sample letter below to write your own, personal letter. If you’d like you can collect many personal letters written by friends, family and neighbors to really push your issue forward.