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 [email protected].

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);
2) send correspondence either via email or US Postal mail; or
3) call their offices.

Below are links to Tip Sheets and sample documents to facilitate your outreach.


Asking your elected official to join the Congressional Hydrocephalus Caucus

The Congressional Pediatric and Adult Hydrocephalus Caucus is co-chaired by Congressman Leonard Lance (NJ) and Congressman Tim Walz (MN). There are currently 27 Representatives on the caucus. You can ask your legislator to join as well.

Link to Sample Letter to Join the Hydrocephalus Caucus

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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