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!
Current CALL TO ACTION!
We are asking you to help us activate your Senators to protect funding for important research at NIH.
Senators Casey (D-PA) and Burr (R-NC) have circulated a letter through the Senate this week (April 22, 2013) asking their colleagues to support sustained funding for the National Institutes of Health (NIH) in Fiscal Year (FY) 2014. As you know, the current budgetary challenges are threatening critical biomedical research funding. In FY 2012, NIH funded $6.4 million in hydrocephalus research; this funding is crucial to finding new treatment options and a cure for hydrocephalus.
Please act TODAY! Ask your Senators to stand with our community to protect funding for NIH in the 2014 budget. The deadline for Senators to sign onto the Casey/Burr letter is this Friday, April 26.
Sample text to use in writing your letter:
Subject: Please sign on to the Casey/Burr Letter
Body: As your constituent and a member of the hydrocephalus community, I ask you to sign on to the letter from Senators Casey (D-PA) and Burr (R-NC) asking to support sustained funding for the National Institutes of Health (NIH) in Fiscal Year (FY) 2014. Funding cuts put into jeopardy years of critical research on better treatment options and a cure for hydrocephalus.
There is currently no cure for hydrocephalus and the only treatment options require brain surgery. It is estimated that health care costs for treating hydrocephalus are $2 billion annually. We have to do better for the 1 million Americans living with hydrocephalus. Funding allows researchers across the country to explore ways to develop better treatment options and a cure.
I look forward to hearing from you soon concerning your support.
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:
- The Support and Education page of our website to access the fact sheets.
- The Media Resource page of our website.
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.
- Link to Tips on Meeting with your Legislator
- Link to Tips on Calling your Legislator
- Link to Tips on Writing your Legislator
- Link to Sample Letter to Legislator
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
We’d like to acknowledge the following links in making this article possible