What Do We Want? A CURE! When Do We Want It? NOW!

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September was Hydrocephalus Awareness Month, a special time to raise awareness nationwide as many eyes turn to our cause as it receives some higher attention nationally. However, we should see every month of the year as our opportunity to raise awareness about hydrocephalus and the one million people living with this condition in the United States today. The current election cycle is an excellent opportunity to raise our voices in the media and, once again, in Congress to make sure that elected officials and candidates alike know we are here and that we have a powerful reason to be heard. Let’s continue educating both the current and possible future politicians about hydrocephalus, reminding them that voting constituents in their areas are affected by this condition.

What Can YOU Do?

There are a number of opportunities for you to help raise awareness of hydrocephalus in Washington, D.C., and around the country, particularly during an election cycle. This blog focuses on how to contact your legislator and engage local press. We have created an Advocacy Tool Kit for you to use with specific tips on calling, emailing or writing your legislators, as well as sample documents to use with both legislators and the media. Take a look!

Remember to keep in mind what we are asking for:

  1. Ask your Congressional Representative to support a significant expansion of the National Institutes of Health’s (NIH) current efforts to establish a broader collaborative research effort into the incidence, causes and treatments of hydrocephalus.
  2. Request that your legislator ask the Department of Defense (DoD) to gain a better understanding of how many of our veterans are now living with hydrocephalus, report how many federal dollars are now being used to treat hydrocephalus, and ensure that research dollars focused on traumatic brain injuries (TBI) are available to help develop a cure for hydrocephalus.
  3. Ask that your legislator also help raise awareness of hydrocephalus by:

How can you raise your voice?

  • Contact your legislator and/or their opponent through an email, letter, phone call, or office visit. For sitting elected officials, you can visit either their Washington, D.C. or local District offices. Click here to see our tips and sample documents. For candidates for office, visit their election headquarters.
  • Write a letter to the editor to one of your local newspapers, including school papers. Click here to see a sample Letter to the Editor.

Let’s commit as a COMMUNITY to engage sitting officials and those seeking office with one or more of these actions! Click here to go to our Advocacy Toolkit.

STAY IN THE KNOW: What’s Happening on the Hill NOW?

We strive to keep you informed on the latest happenings on the Hill that affect our community. Last month, the Senate passed a spending bill, or a continuing resolution (CR), for most government programs, including public health and research programs (such as the National Institutes of Health (NIH)). Congress is now on break for its pre-election recess without the threat of a government shutdown.

The new spending agreement is publicly available by clicking here. It increases funding for most programs by roughly 0.6 percent through March 27, 2013, in accordance with the Budget Control Act caps set last spring.

The new agreement does not address the across-the-board spending cuts (called “sequestration”) scheduled to take place before January 2013. Congress will have to reconvene after the November elections in a “lame duck” session to try to address these cuts, as well as several expiring tax provisions. Many government programs will face at least a 7.8 percent cut unless legislation to replace sequestration is passed by the Congress and signed by the President before January.

Congress will have to revisit the spending bills included in the CR by March, either through separate appropriations bills, through a combined appropriations bill (or omnibus), or by simply extending the CR through the remainder of the year. We need to make the case for more research funding to find better treatment options and ultimately a cure for hydrocephalus.

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