Advocacy Toolkit

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

Join the Advocacy Committee!

Do you have experience working with in the offices of an elected official, at either a national or state level? Have you ever been engaged professionally in the field of advocacy? The Hydrocephalus Association (HA) is looking for you!

The Board of Directors of HA has recently chartered its Advocacy Committee to work on issues of interest and concern to the hydrocephalus community in an issues-oriented, non-partisan way. If you are interested in serving on the committee, please Advocacy Committee Volunteer Application via email to

Resources for Educating

It’s critical to have a list of facts you can use that are short and meaningful before you begin to reach out.  Two great areas on our website to help are:

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.

Below are links to Tip Sheets and sample documents that will provide some guidance to facilitate your outreach.

Asking your elected official to join 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 have large or small in the number of Congressional representatives signed on as members. A caucus can either be specific to particular house (the House of Representatives or the Senate) of the legislative branch, 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.

There are two caucuses that the Hydrocephalus Association works to support and engage with. Please click on the links below for more information on these caucuses.

Congressional Pediatric and Adult Hydrocephalus Caucus

Neuroscience Caucus

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 both the Hydrocephalus Caucus and the Neuroscience Caucus.

All it takes is a simple phone call, email, letter, or fax. Here is  sample language you can use for your communication – Letter to Join the Hydrocephalus Caucus

To search for your Representative, please visit this site.

To search for your Senator, please visit this site.

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.

Link to Sample Letter to the Editor


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