Advocacy Toolkit

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    Welcome to our Advocacy Toolkit. Here you will find suggestions, tips, and sample documents to use when raising awareness of hydrocephalus with elected officials. We are excited to work together to advocate for better treatment options and ultimately a cure for hydrocephalus!

    Resources for Educating Lawmakers

    It’s critical to have a list of facts you can use that are short and meaningful for two reasons. First, you can use them yourself in sharing your hydrocephalus story to an elected official. Second, these are designed to be "Leave Behinds" that you provide to the office after an in-person meeting or in an email communication.

    Communicating with your elected official

    There are several ways you can communicate with your elected officials. You can

    1. Meet with them in person, either in their Washington, D.C., office or in their local office(s) back in their home Districts.
    2. Send correspondence either via email, U.S. Postal mail, or fax.
    3. Call their offices.
    4. Engage with them on social media.

    Our Hydrocephalus Action Center allows you to customize letters on the key issues we are currently engaged with on Capitol Hill. Take action today!

    The Importance of a Congressional Caucus

    A Congressional Caucus is a group of congressional representatives with similar interests or goals who meet periodically to discuss these interests and to develop plans for addressing related issues. A caucus can focus on a broad spectrum of issues (such as the Democratic and Republican party caucuses) or on single-issue causes. They may be large or small in the number of Congressional representatives signed on as members. A caucus can either be specific to a particular house (the House of Representatives or the Senate), or it could accept both Senators and Representatives as members. Many caucuses are co-chaired by a member of both parties. In each session of Congress, there are hundreds of caucuses formed on Capitol Hill.

    Our primary caucus is the Congressional Pediatric and Adult Hydrocephalus Caucus, where we work closely with the staff of the two Chairs. We also engage with the Neuroscience Caucus. Both of these caucuses are in the U.S. House of Representatives. Please click on the links below for more information on these caucuses.

    One of the best ways to engage your Congressional Representative and Senator, and keep them informed of the latest hydrocephalus issues, is to encourage them to join the Hydrocephalus Caucus. You can do that right from our Hydrocephalus Action Center.

    Writing your local paper(s)

    Another way to raise awareness of hydrocephalus is by sending a Letter to the Editor of your local paper. Letters to the Editor can both educate your community and call on your Representatives publicly to support better research funding.

    Visit our Newsroom to see our latest press releases.


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